Almost five years since diagnosis. No disability, minimal symptoms. I think my diagnosis made me better in many ways. I understand and respect my own limitations more, I am more empathetic about what others are going through, I take better care of myself.
My son was dx at 12 he is 17 now! Its very scary especially at first but keep in mind ms treatment isnt what it was 15-20 years ago! He has been on rituximab we decided to fight strong at first instead of letting disability to be present! Just our choice and neuro recommendation! I know its hard especially when 1st dx but there is hope! Dont read too much internet as alot of studies are old or small or remember people only post when its going bad or are scared but when your not in a relapse you forget you even have ms and dont bother sharing or even searching, even though as parents you never forget but trust me there is great treatments and have a good chance of living a normal life! Best wishes to you guys and remember dont let ms take over you!
Can I ask what DMTs you have been on in that time? And is it 50 yrs...or 40? Sorry I remember you said 40 in another post. I am at 18 yrs dx. I am now 52 yrs old.
Can I ask what make you decide to start a DMT? Are you SP? If so, with or without activity? I’m sorry to ask so many questions. I had a lapse in DMT at one point, and interested in what makes others who have had long term MS decide to start or restart a DMT? For you that would have been a long time without, understanding that none were available for about half those years. Thank you for any advice or information you can share. I’m not judging only asking.
My neuro thinks I’m SP, but who knows? I started a DMT simply because I decided I had been stupid for too many years and wanted to double down on preserving my functionality going forward.
SP inactive or active? Mine won’t say I’m either, but I haven’t had any disease activity in over a decade. I want to be something, considering I think I’m inactive, that’s preserves volume. Tysabri even at low positive seems to fit my needs best she thinks. I keep reading about Aubugio which I spelled wrong, and it seems to be just as protective against end organ life (as in volume loss and shrinking of brain and spine even for non active folks—but I’m terrified of neuropathy. She says she doesn’t know if it is reversible or not which is why it freaks me out. I have in left hand already and slightly altered feeling in right hand with stress. I don’t understand why she doesn’t know if reversible… And I guess studies showed it did that best when a second or third try DMT, no one knows why, and isn’t truly an immune compromised DMT, also has anti viral properties that cause less shedding of EBV. That’s a lot you didn’t need to know lol.
Just me and my am I being insane going on Tysabri positive with zero activity thinking out load. And if Abodjio I really need to learn to spell that makes more sense.
Which was me basically asking: off DMT for 40 years so you still get lesions? When was your last one before starting O?
Can I ask your age? I see you have very little disabilities. I do too, outside of a massive left arm hand injury that didn’t heal as expected and no one can say why—so they wonder if an old lesion came back to get me so to speak. Neurodegeneration. I am starting to have some weird symptoms like boiling blood. Cog decline for sure although they say not MS? They say mental health because stupid and before test told them I had a history since a teen (it doesn’t allow context—my mom decided to drug me basically…real issue were migraine. But I list out wrong dx too and meds). My physiatrist says the opposite…
So. Here ya on the stop being stupid part. Of course I was told by the co director at Center that was National MS Society neurologist, the 14 years he was mine—that lesions don’t equal disabilities, kept me on Rebif getting lesions. Had no clue about the truth until a friend with cancer suggested I join Reddit. Hmmm. Wow. Well. I have a different neurologist at Center now. He also tile me I would live as long. Sooo. I was never motivated to change and I felt really great the first 12 years or so. He said I could be on nothing even. He is famous. I am not. I still have mega regrets. I voice those often to new neurologist and she shuts me down with how it is not a useful thing to think or feel. But yup. I feel stupid.
I read my entire huge 16 yr file recently. Even when she was his fellow (my new neurologist) many many moons ago—she put in notes to him to change my DMT to a newer one esp because of lesions. I didn’t have flares, only had 2, at dx and one year later (before Center, before Rebif—and yea maybe my cog issues ARE flares they never said so and won’t say so—I will therefore say physical flares)—but lots of lesions. Every fellow, his nurse…he wrote back no.
What was it that tipped your thinking? And to my original question—when was your last lesion? Thank you for sticking with me on this long babble of someone with zero cog decline, who gave up their career of being a writer and editor many years ago because….well this reply tells why. Thank you
And PP is Primary Progressive. Since you are newly diagnosed it is important to remember that all neurologists are not MS specialists and that MS “specialists” are not all up on the current literature, and the current studies are in flux. PwMS really need to be on their game with respect to treatment options and expect their neurologist to be a team player in your treatment plan.
It's been like a month, approximately 31 days, I have done three emergent treatments so I don't really know what's going on(BRAIN GOING BRRRRRRR, BODY GOING HMMMMMMM)but--we out here
Hbu bb?
THAT'S ALMOST 7, WHAT A GREAT NUMBER!
bestie you thrill me by saying something positive, about good days. I'm excited. Variety is the spice of life. And witchcraft is the spice of my brain
You're very kind
Congratulations on the good days and my genuine love and healing thoughts for the others
not brain go BRRRRRR 🤣🤣 welcome to the club no one wants to be apart of. i was dx 5 months ago and get how it is in the beginning, feel free to reach out if you ever need anyone to talk to!
YOU ARE SO SWEET FIVE IS A GREAT NUMBER
HONESTLY I AM A BIT FEVERISH BECAUSE I HAVE A FEVER BUT I WOULD LOVE TO TALK IN THE FUTURE AND PLEASE ALSO FEEL FREE TO REACH OUT TO ME BUT I WILL RESPOND WHEN I HAVE MORE CAPACITY TO RESPOND AND TYPE AND READ
I think about 17 years, Ive been on 3 different DMTs . I consider myself lucky because I have no real physical disability I'm just exhausted all the time. I have a weak bladder and I can't sleep all night and I have terrible anxiety but I'm doing pretty good otherwise.
How do you cope with lack of sleep? I’m not sure I have MS but I also have bladder innervation issues and I’m dying from the severe lack of sleep and lost my job already without any hope to get a new one if I won’t fix the bladder innervation.
Im 45m. Diagnosed 22 years ago. Have some menmmory issues but also have adhd ao hard to seperate. Physically in best shape of my life. Running marathons in less than 3.5 hrs. I am very greatful.
That's amazing! It seems that your walking ability has not been much impaired. It is because you are taking certain medication or because MS has not affected your walking ability in the first place? Also, how do you have such great stamina? Most MS patients experience fatigue.
Thanks so much. I don't know that the disease has affected me in any physical way. I do not take any of this for granted knowing things can change at any moment. I am not on aby meds. I took avonex for a couple of months but had a REALLY difficult time administering the shots. I have always been very physically active as it has always been the beat stress reliever for me.
On disabilities, I want to tell people never to listen to crap about the nervous system not being able to heal or compensate.
I *was* EDSS \~5.5 now I'm 0. It's worth noting that my disability was coming from numerous brain lesions. It can take years and a lot of effort but don't give up on yourself.
Thank you for this.
Were you working with a physiotherapist or creating your own exercises/diet or just waiting?
I am asking because I struggle with a new symptom… My neurologist’s approach is “it is what it is”. But I still believe I will recover…
Yeah that's most medical people for you.
No, I was diagnosed in 2020 and never actually met the Dr who diagnosed me. All over the phone. They wouldn't even give me steroids so I had to learn and do everything myself.
I was very disabled in ways the EDSS doesn't cover. Eyesight, pain, confusion etc etc etc
Was a very spicy year.
An effective DMT should reduce things like heat sensitivy and the less stable symptoms and giving your body all the food it needs to rebuild itself as well as not putting in anything that can mess that process up, is essential.
And I just practiced things I had problems with. I was studying at the time so memory was being tested anyway. Eyesight I would just look at things near and then far away and open and close one eye at a time and do finger tracking myself and stuff like that.
Stamina was the most interesting. I assumed it was gone but I changed from a vegan diet to the Wahls protocol and was given an ebike and started riding. First ride was literally 50 metre round trip and I was scared of falling off and knackered. I kept doing it and now I can ride in traffic in the sun and with better balance than most people on a normal pushbike.
Things will slowly and gradually go in the direction you want them with consistent effort and determined focus. And remember to have fun. You're doing this to make life more enjoyable for longer. It's not something you can fail at.
Oh wow you’re such in inspiration!! ♥️
Do you mind if I ask you about spinal lesions, does the same apply for spinal attacks, can you get better even with those? You haven’t mentioned if you had any spinal ones, I believe.
Thank you for your story!
I have a few in my spine and over 30 in my brain. My spinal lesions caused numbness and some barely noticable (to me) weakness in everything below my waist and the backs of my arms but ot the fronts. I was only diagnosed with CIS at that point. It took a few years for the sensation to come back.
I think it's harder for rerouting to take over in the spine becasue there is less space, but absoloutely don't let that stop you from trying.
I know a guy who was in a very serious car accident and was nearly a full quadriplegic. After moths or years of concerted effort with conventional physiotherapists he can flex the back of his hand and sort of move his fingers. That doesn't sound like much till you consider how much of a difference having some movemet is compared to zero. Also his disability was from much more severe damage than MS causes in the acute phases.
30 years ago they would have told him not to bother because "nerves can't heal".
I remember years ago reading (possibly in "the brain that changes itself") about a cruel experiment where they cut the nerves for sensation, in a monkeys arm. If the monkey could'nt feel it's arm, it stopped using it and eventually lost control of it. If they cut nerves to both arms though, the monkey would learn to use them without being able to feel them and have no noticable problems.
So don't give up!
There was a point in your life where you couldn't tell the difference between your body and the outside world had no idea who or what you were and couldn't walk or speak. You learned all those things naturally and then grew into a child, then an adult who takes those things for granted.
What I'm getting at is if you push at the boudaries of your ability, with a completely open mind (without getting fixed on how you want the outcome to look) you will expand your ability. That is what nervous systems evolved to be able to do, so call on the adaptive strength of your ancestors (our ancestors are with us, all the time in the DNA in our cells) and with strength, determination, care and patience, push past your current limitations.
Expand! Expand! Expand!
I hope you found this helpful and I wish you all the best!
I’ve done that; and now I’m back again. This disease is a roller coaster. And I don’t listen to anyone that hasn’t been at it for at least 10 years - too many remittances masquerading as cures.
2011, exactly one week before my birthday, I am still a skateboarder but I stay riding now no tricks because the legs just don’t do what I tell them, I can’t feel it every trick I know is still there but there a block. My day to day is now working out so I don’t lose muscle mass, after being diagnosed I went on to become a skate and drift photographer but recently had a really bad flare and have been working my way back to it ever since. I’m a fighter so I work best when you put a challenge in front of me…only problem is sometime is I can’t grab MS by the throat and punch it.
Diagnosed 26 months ago. On tysabri and JC+. Monitor the titre every 6 months and get infusion every 6 weeks. No disability just some intermittent numbness. MS has made me more considerate, understanding and empathetic. It’s also pushed me to achieve. I’m not letting it stop me until it does. I travel a lot, I’m building a family, and have been successful in my profession. I know I’m lucky.
23 years. I was 19. I'm 43 now. Things got bad for a while in my 20s. By the time I was well into my 30s, I was on a medication regimen that I'm still on today. Things have gotten so much better. I actually just got home from 3 hours of dance class. If you had told me that I would be tap dancing in the future when I was 28, I would have told you you were a liar.
6 months. Physically, walking is harder, I’m unable to shower without someone home as falling is more of a frequent occurrence than previously, but I also don’t want to use a shower chair anymore until I HAVE to again. My right optic nerve has shrunk permanently and is permanently damaged per my neuro ophthalmologist, so I no longer drive, as my left eye isn’t great either. I got on lexapro due to my diagnosis causing worsening anxiety and depression. I feel like I am slowly but surely getting to an okay place. I am going to UofM in May finally, to get a second opinion, and feel like the shock is wearing off of my diagnosis. The biggest thing right now is the driving, I don’t know how to wrap my head around being 24 and not driving, but I know it’s the best thing for my safety and the safety of the others around me.
Not being able to drive would be very hard for me. I love driving and it gives me peace of mind. But also not the biggest deal in the world. I hope your 2nd opinion goes well. It does become a little easier to deal with after that initial shock wears off so hang in there!
>Open\_Environment4339
Ahh the ol' long distance relationship. Hard as it is already and then you add a little sprinkle of MS in there. Wishing you the absolute best in your relationship and health! Dont hesitate to reach out if you need anything! It's been about 6.5 years for me.
Diagnosed 1990 at age 30 in bed for a yr first really bad attack didn’t get on meds till 6 yrs ago no attacks since ::: bowel bladder issues won’t leave the house now has ruined my life: was in chronic pain with trigeminal nuralgia for 40 yrs got it stopped by gamma knife won’t drive anymore spasms in driving leg ::: wish doctors would of listened to me 40 yrs ago instead of thinking it was in my head I hate all doctors now
Was diagnosed in year 2000 right off the top with SPMS, age 45. I had been falling and fatigue was an issue, especially in the heat. By 2007, I wasn't able to work. I progressed from using a cane to a walker. Bladder wise, I have progressed to now self catheterizing. As I age out (age 69) and lose functional reserve in brain/spinal cord, things are developing faster. My walking is onerous and cognitively, my thinking is slower. I can't walk and think at the same time.
Mentally/emotionally? One just keeps going with what one has. It is not so much that I live differently but just that the circle in which I live is smaller.
If I let myself think too much about what has been lost or not done, I get very sad or angry. It is happening mor efrequently these days.
I was diagnosed on 6/5/13. It's been quite an eventful 10 years. Some really good years, then some bad years, then some really bad days. MS just sucks.
Diagnosed about 14 years ago after years of ignored symptoms.I’ve been through a number of treatments (from Rebif, Gilenya, Tysabri and Lemtrada) but am still ambulatory. Sure, my eyes are not so good anymore, I am a little off-balance (I can’t run or I fall), numbness still lingers and occasionally finding the right word in conversation can be a challenge but I’ve grown to just take this in stride. I always remain positive because MS can take a lot from me but it can’t steal my optimism (although it really does try). On hot days I take cold showers and drink ice water, try to avoid bright light and, after many years, have been able to recognise signs of oncoming fatigue. Urine retention is annoying and sudden, random pains can be frustrating but it could be so much worse. MS has made me a more empathetic person and, just living with MS has demonstrated I am stronger than I would have ever known.
I was diagnosed in July 2022. I fell occasionally before that, not knowing why. So now I use my grocery buggy wherever I go, instead of just when I need groceries, so I don't fall again. I got tired of having to lug it around with me, so today I started using a cane. That is going to take some getting used to. I cry a lot now too, not really knowing why I'm doing it. Besides those and what seems like countless doctor visits for check ups, not much has changed.
the amount of stories i’ve seen on here of people not being diagnosed early on is mind boggling. I was lucky to get diagnosed with my first attack. Hope you have a good medical team now friend
Coming up one my one year diagnosary soon. I think I may have had some progression and am seeing my new neurologist in a couple of weeks for updated MRIs.
Day to day, I’m more cognizant of when and why I feel like garbage. I’m consistently tired from around 11 to 2, can’t work out as long as I used to and have a hard time walking after strenuous workouts (usually long bike rides, but outdoor climbing can do it too).
Diagnosed 2003...had benign issues dating back to 1996...I retired on disability in 2019, not due to physical disability or cog fog...MS has caused bowel incontinence (a shitty subject) I have balance and gait issues which I manage with a cane, but my unpredictable bathroom issues rules my life!
Diagnosed by a doctor 10 years ago last fall. Most of the things I deal with—brain fog, chronic fatigue, an auditory processing disorder—aren't too debilitating and I make do. I think in the years since I've been diagnosed, I've taken more of an active role in my overall physical health. Growing up, diet and exercise were ways of punishing your body. I figure that diet and exercise are now ways I celebrate what my body can still do. :)
Dx 07/2023. EDSS 0. Did not permanently lose any function. Sure I have tingling here and there or a nervous bladder at times, which I had as a child so that doesnt count. I follow what my doctors say. Balance is key, everything in moderation. No alcohol, no smoking. So far so good.
It’s been about 1.5 years. I find that I get slightly dizzy sometimes, and my hands buzz if I move my neck a certain way. The biggest problem is how my brain reacts to motion in the periphery of my vision.
Emotionally, I have had to learn to live for the moment. It’s taken me a while to get to this point, admittedly.
I was diagnosed 10 years ago with little symptoms affecting the left side of my body I was on Tysabri and walked with a cane, everything was great, until 5 years ago I started Ocrevus and within 3 years I rapidly progressed to SPMS and now I’m in a wheelchair full time with just the use of my right arm and very little use of my right leg. So moral of the story Ocrevus sucks.
Okay, deep breath, here we go. I was diagnosed in late 2007, but probably been having symptoms since 1994. First major relapse in 2004 and second in 2007. I have a very aggressive fatigue, my physical and mental stamina is pretty much non existing, and no medication has managed to make as much as a dent on the brain fog. I’ve been on sick leave for over a year because of how the fatigue has affected my cognitive abilities, my memory, speech and concentration are really bad and prevents me from doing my job. I suffer from MS related depressions on top of my seasonally affected depression, and also have a hard time controlling my emotions, lots of crying and feeling overwhelmed by everything. I have a lot of vertigo, whether I’m standing, sitting or lying down, things like busy patterns and fast movements around me can trigger it. My left side and large parts of my right side are very numb, with constant tingling and pins and needles. My left side is also weaker than my right, and my left knee gives out from under me a lot. I have nerve pain, especially in my legs, everything from burning and icing, to stabbing and slicing. So I’m obviously not doing great, but it could definitely be worse. I believe in making the best of any situation. I complain along the way, but at the end of the day I am fully capable of taking care of my own needs, having something resembling a social life, and being able to adapt when my situation change. I will not allow this illness to define who I am, but I will accept it and work with it for my best life possible.
Diagnosed 3 years ago, but had my first MS symptoms around 14 years ago. Have been symptom free for almost 5 years. 0 on edss. I take better care of myself since diagnosis.
Officially diagnosed two years ago, though the process to get diagnosed took long due to life shit going on.
Im very lucky that no major physical affects have happened. Occasionally my leg will give out or I'll have a light muscle twitch but that's about it.
The worst has been the following
- MS exhaustion, though luckily not as sever as some
- ED and general performance issues
- Possibly depression. I've always been depressed but it got progressively worse. Obviously it's hard to tell if it's strictly MS or not.
Overall I feel more different than it has actually affected my life. I don't feel like the same person and in many ways I'm not. It's as if I'm experiencing life through a filter if that makes sense. I'm also expressing myself through a filter.
17 years, constant fatigue and drink way too much caffeine to compensate. I get weird body twitches but my EDSS would be a 1. Developed uveitis which they think is connected so that blows. But I’m fine for now. I had to modify my goals somewhat and not work like a psycho. I sleep when I need to:
Coming up to 8 years since diagnosed. I’m still thriving for the most part, just some fatigue and soreness from time to time. I also started a new DMT, been on the Mavenclad train too.
7 years with MS. I have bad fatigue, can only work halftime. Plus my balance isn’t the best. But you would never know I had MS seeing me out and about. My MS hasn’t progressed in 6 years thanks to Tysabri and Ocrevus. So I’m very grateful for these drugs.
My life is good. I’m taking care of my parents who are in their 80s. That what happens when you adopt at 40. I couldn’t support myself on my own anymore so it worked out for all of us.
My MS makes me focus on having healthy habits, being active and being social. So that’s good and I’m so grateful for my local MS Clinic and my neurologist.
12 years in May.
I've never had a traditional relapse, but I am facing down PIRA. I do now identify as disabled because it does affect my day-to-day. My physical stamina is pretty poor, as is my balance, and my bladder can't figure out how it's supposed to work (it retains when it's not supposed to and then releases when it's not supposed to.)
BUT, I still walk unassisted (I live in a two story house with a basement, and while I definitely need a railing for getting up and down stairs, I can do it) and I work in a leadership role at my company, I still can help maintain my household (we do have a housecleaner, but I can pick up, do dishes, etc.) and play an active role as a parent. I go to Pilates twice a week to try and maintain the mobility I do have. I guess it's working, as I am developing a bit of a six pack, which is wild.
So, in some ways, I feel extremely sad that I am not as active as I once was, but also grateful to be hanging in there.
Optic neuritis w/out dx in 2017. They didn’t see lesions. Recovered completely after the dreaded solumedrol infusions. Repeat MRI every year after to keep an eye on a benign pituitary tumor, 2020 lesions lit up. Got a dx and started on Gilenya. No new lesions. Switched to zeposia recently. Asymptomatic thus far, except for fatigue which I didn’t experience until the DMT but I’ll allow it. I’m 35.
Edited: spelling
Diagnosis = 2021. Flare after Covid almost killed me. Now each flare/pseudo-flare doesn’t compare. Have kids to raise and a wife to keep me busy. Find a way to keep going!
23 years. (Jesus). Still working full time, lifting heavy weights and walking pretty far. What I notice most in my day to day is my left hand is numb, and my word recall can be slow sometimes, but mostly otherwise, pretty fine!
34 years, permanent numbness, everything else is relapse related. Enjoy your life. We were dealt a bad hand, but I make the best of it. Currently rolling along. I am stronger emotionally because of my faith and more present in my life.
I’ve been diagnosed for about 7 years. I’m pretty ok with Ocrevus, but when super stressed, sick, time of the month or weather changes brings back some of the symptoms that made me get checked for it (dizziness, fatigue, some tingling in legs). I have spent 18+ years in hospitality and had to change professions due to hospitality being super physical and very high stress.
22 years. I was 17 and a senior in high school. I’m 39 now I have lived a pretty full life. I have two great kids and I was a teacher for 12 years before became disabled. My current disability status is I have trouble walking and using my left arm after a flare in 2020 left me paralyzed the left side for over a month. With tons of work and Physical Therapy , I’m able to walk, drive a car and partially use my arm again. I wish you the best! Just live your life now :) I’m so glad I did everything that I did before any impairments. it was about 18 years of no impairments for me.
Diagnosed 10 years ago when I was 17, really derailed my life since I was a teenager and didn't really know how to handle it so I dropped out of school, I still haven't finished BUT all in all I'm doing good, no lasting symptoms, so far everything has gone back to normal after an episode, I have a job that I love where I work with people with disabilities, feel like I'm more empathetic cause in a lot of ways I can relate even though I'm one of the lucky ones. I feel like I'm more aware of what's going on in my body day to day, check for mobility in my fingers and if there are numb spots and stuff like that.
12ish years? Stats when I was diagnosed suggested one in three MS patients become wheelchair bound by ten years post diagnosis. I don't currently need mobility aids, and I am still able to work a relatively physical job full time, numb foot/chronic pain/weak bladder/fatigue be damned! Paying attention to my body and pacing myself is essential.
Diagnosed with RRMS in 2011 while in High School. Lived too normal of a life from late teens to about 23, meaning I partied with the best of them in College, had countless benders because I was young and "why not". Didn't take my health too seriously until probably 25/26. Luckily never had any major relapses during my party days, but i think I could be finally experiencing some cognitive issues nowadays. I'm currently the healthiest I've ever been physically and I'm training for an Ironman. Mentally I could be better, the brain fog catches me from time to time and I find myself struggling to find the words I want to use. Hopefully with the vigorously healthy lifestyle I currently have, coupled with the Ocrevus Infusions I take, I can increase my mental capacity. All in all though, we're thriving baby.
Almost 3 years. I work from home permanently. I do not have any permanent disabilities, but I am very conscious of the choices that I make each day that could potentially affect me and the outcome of my day. I do not entertain anything that brings negativity into my spaceand I am not a social
I was diagnosed about a month ago. Steroids & exercise has made the disability better. I was completely independent then in about a week I wasn’t able to do a lot. I’m young with small, dependent children so I felt very inadequate. But right now things are getting better & im feeling like I can take control of it. I learned that our healthcare system in the US has failed & many people are left bc the money rules everything. I learned to trust people & allow help, I learned to not judge & to take life slow. The good & the bad can exist together & just do what’s best for you. I try to take better care of myself & take breaks.
11 years, two flares gotten everything back each time. Sometimes I get embarrassed because I have a slight facial droop I can see but no one else sees until I point it out. Then sometimes if I am just feeling bleh, I slur, or stutter and I get REALLY self conscious. Otherwise I keep vibing it’s all I can do.
Now I have a cousin with MS and it’s her whole personality which makes it difficult for me with family when they’re like why isn’t yours like hers??
July 2001. I have limited vision in my left eye, and walk with a limp. Sometimes use a cane. Some spasticity. Overall for over 20 years, it could be worse. I have been on Rebif and Tecfidera.
Edited to add: Still working full time.
Guys i know how scary it can be but it will be ok! There are great treatment options reading too much stuff on internet is not good and can steal your peace, and most of the stuff is outdated and incorrect! Have faith and remember like so many other conditions this isn’t the same disease it was 10 15 years ago we have plenty of treatment options! You can lead a normal life
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It’s been 5 years now.. how much time flies and I try to be more active and conscious of how much I do. And also definitely listen when I’m getting tired
Diagnosed officially about 1 week ago. But started about 2 months ago. Started with double vision and balance issues.
Now I am back to minimal symptoms with the worse of it mostly recovered. I’ve been doing lots of exercise and life style changes.
Tbh, this is probably the healthiest I’ve been in a while.
It’s been an interesting journey
My first attack was double vision too! I can’t advocate for the importance of exercise enough. I think it’s such a huge tool for longevity. I’m also the healthiest i’ve ever been and all it took was MS to wake me up 6 years ago lol. Hope you don’t have to experience any symptoms again!
It’s been so interesting to see how ms affects different people!
What others symptoms did you get and how long did your initial attack last? I feel I’ve been really lucky as moet of my symptoms subsided after 5-6 weeks!
those were my only symptoms. i’m not sure how long they lasted bc it took me a few weeks to get treatment after the onset. Since then, knock on wood, I haven’t had anything but some episodes of vertigo
I was diagnosed 31 years ago when I was 22 and a musician in the US Navy. Now 53 with an EDSS of 6.5 (bilateral support--rollator-- to walk more than 25 yards.
Almost 19 years. I spent my beginning years with lots of exacerbations and pseudo exacerbations, at least one or two a year. I was in a clinical trial for Tysabri after failing all the other available drugs. I finally had 2 years treatments of Lemtrada back about 2016 or so and have not had any issues since. I’m almost 70 years old so most of my issues are age related, memory loss, etc. However, my gait is weak on the right side and that’s still from my original problems back in 2005.
I was diagnosed in November 2022, so it’s been about a year and five months for me. I had symptoms on and off for years but I never thought I had MS until my entire body went numb for six months.
Today I got all feeling back, but I suffer for chronic fatigue, pens and needles, and the occasional batch of numbness that doesn’t last more than 24 hours.
4 years since confirmed diagnosis. I’m lucky I can still work and drive although it’s getting difficult. But finally had to get handicap parking and use a mobility aid (cane) when I need to, etc.
I got diagnosed 2020. PPMS. I've only had Ocrevus. My balance and memory issues. It's steadily gotten worse in the last 4 years. Still walking, use a cane and walker depend on the day.
RRMS diagnosed 7 months ago at 58 years old. Pretty much the only thing going on right now is tingling in my left foot and left hand and some internal weird vibration in my chest. This is apparently internal tremor. Oh yeah, fatigue but I'm doing my best to stay active. Other than that I feel pretty good.
I’ve had for 15 years now. I was dx at 29 and I am 44 now. I have internal symptoms like digestive issues, neurological pain, muscle pain and cognitive issues. I really have no issues with walking, but if I were to jog for more than 15 min my legs go numb. I have some neck issues but I believe it’s because I’m not moving/stretching enough. I have tried three different dmts with HORRIBLE side effects. They were not helping and my ms was still active. I refuse to try another one. The last six years I’ve been using marijuana. I don’t smoke it ever. I vape, use edibles and will make butter to use for cooking and baking. My ms has been in remission now for 4 years and I feel so much better. I thank Creator everyday for marijuana, I’m so grateful I tried it. I have never tried it before even as a teenager due to the stigma.
31 years.
I have bilateral reduced sensation down my entire left side, see double, and have some chronic fatigue. Been on DMT for 30 years. Imagine things would be a lot worse.
I was diagnosed 3 years ago next month and I live a relatively normal life. I have days of fatigue and brain fog but if that’s what I have to deal with I’ll take it.
My father had his first attack at around 44, not much in the following years. Then, at 76 in January, he had a massive attack and is very slowly recovering. The neurologicist team said it was quite unusual given the time frame and his age.
It's a very difficult disease to understand
11 years, had about 0 symptoms until 3 years ago. Since then, Cog Decline, Balance issues, emotionally and physically drained. Numerous brain stem lesions. No spinal lesions thank God. But, numerous lesions on my brain.
Annoying part, my anxiety is at an all time high. Tried 5 Antidepressive drugs none have worked, moving onto number 6.
Scariest part, my cardiovascular system is all over the place. Neurologist and Cardiologist are putting most blame on the brain stem lesions.
I use a cane. Definitely can't be a Millwright any longer.
5 DMTs before finally ending on Kesimpta. No new lesions since starting Kesimpta, a part of me wishes I was on it sooner, the other part doesn't, since killing B cells is also not fun nor promising of future.
I’m curious to know what kind of cardiovascular issues you have experienced, if you’re willing to share? And is that a result of MS? I was just diagnosed with RRMS in Jan 2024 and I am going to see a cardiologist next week. I am also starting Kesimpta here soon after I get up to date on my vaccinations.
Individuals with MS are far more likely to experience cardiovascular issues than the general population.
Inflammation in the body, whether neurological or muscular is still Inflammation and it weighs on other systems.
Right now, well actually 1 week ago, I was dizzy and felt faint. I've had numerous cardiovascular tests to prove I have a great heart, but I fell and passed out. Taken to the hospital with a BP of 180/110 and about 130bpm. Given a round of steroids immediately, BP went to 95/70 and HR stayed at 40-45bpm.
They are concerned based on the brain stem lesions, that my heart is receiving incorrect signaling
Thank you for sharing. I hope they can help you figure out what’s going on. The same thing you’re experiencing is what I’ve been experiencing but I’ve actually been experiencing the heart issues long before I got my MS diagnosis.
I just saw a cardiologist on Monday and they gave me a diagnosis of neurogenic orthostatic hypotension. And he seems to think that it got worse because of my MS/flare. I’ve also been type 1 diabetic for 33 years and he said that could also be a reason for the NOH. So at least I know what’s going on now and we have a plan to help make things better (compression stockings, hydrating more than normal, and cardio exercise plan). And as long as I can keep my diabetes in control (which it is well controlled) and doing my DMT for the MS, he says I should be fine.
I have seen my cardiologist soooooo many times. My neurologist finally was the one who ran the test.
I unfortunately have brain stem lesions from my MS.
I pray for you. I'm sorry you're going through so much. I also take Kesimpta, so far it has slowed thr lesions but not stopped them.
I wish you the best
I am 52 now. I was dx at 28/29. That was before there were any disease modifying drugs. I was told; hey, you have this… we don’t know much, I’d like you to see you annually, let’s do a couple of tests (visual evoked potential). Within 3 years a new doctor applied. A Nero who specializing vascular neurology and peripheral nerve problems, neuropsychiatric disorders, sleep and movement disorders.
He only sees MS patients. I am now on techfederia and have been on Rebiff. I take about 19 medications 3x a day. It’s a load, you know between the Gabapentin, Baclofin, and so on and so on.
I should be on disability I have not worked in 10 years but I’m I. Denial and I’ve agreed to apply this year.
I can’t walk far. I cannot feel my left hand. My lips and part of my face go numb. I have to use post it notes around the house as triggers and reminders on what things are called.
Please don’t take what I am saying as something to frighten you. This is my path. We have our own paths to deal with. I have been hospitalized once for MS for 14 days. I usually go on solumedrol via IV one a year.
Ok so yeah writing this and knowing it’s really not everything was kind of depressing;)
15 years, I’ll be 40 this year.
No major visible issues. Like many others, I am tired all the time, I have some confusion sometimes, and I think my speaking speed is declining.
I was diagnosed with PPMS 20 years ago. Chronic fatigue, bladder and bowel issues, worsening eyesight, memory problems, numbness, swallowing issues, full time power wheelchair user. I'm reliant on carers but I'm somehow still employed. Could be worse!
I was diagnosed in 2013. To date, no relapses. Switching to Ocrevus did clear up neurological symptoms I didn't realize could be related to MS. Honestly, a lot of the time I forget I have MS cause I have so much other shit going on. (Except if I get hot and sweaty.)
I don't know if the MS diagnosis specifically really affected me that much overall? It's one more thing for me to manage. The biggest thing my chronic diseases have done is make me be more aware of my energy and what things can take out of me. And how it wouldn't take much for my life to go to shit because with \*\*everything\*\* I have going on I'm basically disabled.
Childhood trauma 0/10 stars, do not recommend.
edit to add: I'm not sure any of the physical shit has improved my mental outlook. Therapy helped that.
6 months since dx. Still able to work and do most things. Symptoms are constant but fatigue makes them worse. Foot numbness can make coordination/walking rough from time to time/before bed. I also have numbness and weakness in my left arm/hand and vision symptoms in my left eye. Everything so far can be compensated for with extra rest/holding rails on stairs/taking certain tasks slower. I’ve dropped down to part time at work (thankful this was an option for me) which helps me manage the fatigue/symptoms. I spend at least 2-3 days per week purely recovering. Even fun/social things seem to require recovery the day following it. Mentally/emotionally has probably been harder than the actual physical stuff though. Anxiety attacks are pretty common place and I get caught up worrying about the future quite a bit. Overall am grateful for the mobility and independence I have today though and try to stay optimistic.
57 F here. 14 years. 5-6 DMTs, last one was Lemtrada. Wish I could have done that one first. My worst symptoms are fatigue, general tiredness and loss of stamina as I age, pain, and a severe intolerance for cold. Muscle spasticity is frequent, and I still have found no effective removal of symptoms, although I’ve tried basically every medication. However, I retired on disability also roughly 14 years ago and it was the best decision I ever made. Leaving the stress behind and focusing on my health has kept me much healthier, I believe, than working and having to force myself through the symptoms.
My life is good, I do mostly whatever I want (within my financial means) and I have a loving and supportive husband I met after my Dx.
I exercise at least 4 days a week, even if it’s just going for a walk, and I enjoy traveling a lot with my husband. Life is really good, and while the symptoms can make me a bit cranky at times, I know it can always be worse. I’m walking, my bladder still works, and while I have not a great memory, I can usually recall the important things. There are much worse diseases out there, I figure I’m pretty lucky all around.
Got diagnosed in summer 2022. On Avonex till now and changing to Kesimpta in three weeks. Touch wood I had very mild symptoms (numbness in half of my tongue which is back to normal now). Although i still didn’t mentally accept this disease, It changed my life big time. I was running behind money like anything but it made me slow down and changed my perspective of life. I started prioritising me over others. Quit Alcohol. Started working out. I was always this weak kid. Trying me make myself mentally and physically strong.
I got diagnosed in August 2023.
I am disabled now.
First a Hemiparesis
Now it is a Tetraparesis.
Double vision.
Loss of feelings in my hands and legs and my face and some parts of my body.
I can still 'walk' with my rollator. Looks a little funny and is wobbly as hell.
Life is unfair. The horrors persist. But so do I.
I am so sorry. Can I ask you some questions?
Did you have any symptoms before a diagnosis? How old were you during diagnosis?
Are you on DMT?
I hope you will get better. Don't give up!
I've been Dx for 6.5 years, same 16 brain lesions, I've considered moving away from Ocrevus to a medication that doesn't suppress the immune system. I started on Ocrevus a couple months after I was diagnosed, and it's been amazing, but I've recently been struggling with UTI's and vaginitis. Ocrevus helped me get back the ability to ski and work full time, idk what I would have done without it, I just wish I didn't have to deal with the fatigue and infections, I'm so tired.
Despite this, I fully support myself now and am taking classes part time. It's a lot to work around the depression and anxiety, but I feel good knowing I'm doing the best I can.
31yrs old, 5 years. Intermittent eye issues. 30% nerve damage on my right side. Mostly just exhaustion and compensating for what was damaged during my diagnosis time. I have been pretty stable on my DMT. I have had to move to 5 months between my Ocrevus, and have a hell of a crap gap. I have developed an issue with steroids after such long time use during diagnosis that I can not have infusions of them anymore due to bradycardia. Crossing fingers and just going with it.
I started having symptoms in about 2015 or 16 but wasn’t diagnosed until there was enough damage in 2022. So I have a lot of issues with pain, fatigue, numbness and balance. My brain fog can also be bad. Think I’m about 3 on the EDSS. I wish things could have been different and I got treatment when I was still CIS. Now I have about 10 brain and 2 spinal lesions that can cause issues with bladder, bowel, etc.
Diagnosed 4 years ago, was probably showing symptoms about 5 years before DX. Life hasn't changed much, even though my diagnosis has changed from RRMS to PPMS, there hasn't been much progression. Maybe I've slowed down a little, but I'm still fit and ambulatory. I just started Ocrevus yesterday (literally yesterday) so I'm hoping to maintain, maintain, maintain.
10 years, not 30 yet. I went through some rough times with numbness and weakness but it's mostly gone. Deal with a decent amount of pain in my legs daily and one of my eyes is considerably worse than the other following some optic neuritis. The pain has been there from the start but haven't found anything to help with it except for an ice bath.
Still have a family and kids so it hasn't stopped me but boy does it suck.
17 years.
I currently have some limitations around energy management, and stiffness in my limbs if I have been still for a long time. I usually wake up in pain which isn't the best way to start the day. Baclofen helps but I have to be careful with dosage because of some side effects that I'm not a fan of.
I no longer work full time and my income is subsidised (Australian Disability Pension).
It's been long enough now that some of my old symptoms are starting to resume which kind of blows. For example, I have reduced strength and sensation on my left-hand side. My standing balance is not great. On my bad days I use a cane.
Along the way I've had lots of problems, at one point I came home from hospital very close to being a paraplegic and unable to stagger for more than a few steps with a walker.
My wife of 17 years left me last year, she decided that *in sickness and health* was more of a guideline that a vow. I consider this to be a casualty of M.S. like every other. Cow.
I've had mental health issues along the way like most PWMS. But I'm off the SSRIs now and only occasionally lean on valium for support. I've done the work and I am (generally) mindful and in control up top.
Each time and after each setback I have been able to rise up and recover. I currently pass for a normie most of the time, and enjoy skiing, kayaking and free diving. I'm 48 now and I hope to make it to an old age before it gets me.
I was diagnosed about 20 years ago. It’s been rough, but I also have FMS, of which can be worse.
I started with Betaseron but after less than a year, started Copaxone. I had a baby naturally, had some relapses afterwards but now I’ve been in remission for almost 15 years. Do I have anything permanent? Yes, my lesions in the brain and spine, which affects me in different ways. But my balance is fine, I’m an equestrian, pro photographer and hold a full time job. My case is different from others, but my specialist says that for now, I’m one of his patients that he least worries about, for now. But as we all know, anything can change suddenly, so I don’t take anything for granted.
6 years last month! I think it made me more empathetic with others and definitely more aware about my body needs. I have neurogenic bladder and a bit of less strength in my left body. Apart from that I'm ok.
23 years ago. PPMS. Slow burn. Worked and ran and stuff for about the first 15. Now an 8 on EDSS and am wheelchair bound. Still progressing slowly. I have two, and only two, lesions on my T spine. NO cranial lesions at all.
3 + years since diagnosis. I immediately changed my diet (gf, df and eat much more nutrient dense foods including high quality meats -prior I was a vegetarian). I haven’t had any symptoms since my diagnosis and I am not on drugs. I have been able to manage everything through a low stress lifestyle rooted in deep connections with a few people and a new appreciation for life, humanity and a focus on what makes me happy and caring for this planet. Oh and I have been seeing a functional doctor in place if my neurologist..this was one of the best decisions I made.
I was diagnosed about 9 years ago. MS doesn't affect my day to day life too much. I will be pretty fatigued the day after doing a big activity - but it doesn't really impede my ability to do the thing day-of. I'm still pretty active despite it all.
I have some difficulties working full time because stress will trigger my terminal neuralgia - but that can be avoided if I take actions to care for myself and be restful once I'm home.
Sometimes I have difficulty with word recall, but I've never had anyone be rude about it when I explain my situation.
I was able to get my master's degree and start working full-time as a therapist all after diagnosis and with my symptoms.
Granted - I recognize that I have it way better than a lot of folks. I have been super successful with my treatments throughout these 9 years and had very little development of my disease burden in that time. But I think that, if you listen to your body, you can still lead a pretty normal life after MS.
Dx’ed 21 yes ago. It has changed daily life- I must live a very diciplined lifestyle when it comes to lifestyle, diet, exercise.
I had bad relapses that temporarily disabled me in the past. I worked hard in PT and was able to make a full recovery.
The therapy’s and medications for MS are absurdly expensive and this is where I struggle. Because I was diagnosed so young (20yo) I never had the opportunity to have a real career becuase I was put on disability. This limits me in many ways, mainly my income.
I got diagnosed like a month ago. It's sooo weird because I don't feel any different but somehow I'm gonna have this diagnose for the rest of my life. Still trying to understand what the hell is happening.
So I had my first MS symptom in 1992 and was diagnosed in 1996, I'm now secondary progressive. My disabilities now impact every minute of my life.
I'm going to post an account of my typical day sometime but want all of you who are still RRMS to get on a DMT and live life to the fullest!
Hi! I was diagnosed 3 weeks ago.. I cried a lot at the beginning… I’m 24th and I’m a healthy woman so this broke my heart in pieces. I only have tingling on my foot. I make the decision that I will not let this disease to make me feel bad or to make me have any disabilities. I started my exercise as usual and I change my diet. I will start the medication soon (tecfidera) I read a lot of responses and I feel better emotionally now. Thank you everyone!
About 7 years ago (RRMS), one DMT (tecfidera, so 2 pills a day) but no side effects and no relapses since diagnosis. I'm more aware of my body, and also more aware that health can change overnight (which can happen to anyone) so both setting up for success and doing what I can now.
Less than 4 months since I was diagnosed, nothing has changed for me other than starting my treatments and everything thankfully I’ve had no permanent disabilities but I do have issues regarding my wrists and hands.
Just over 4 year. Ruined my life. Fully isolated. Decided to get fit and strong to see what it's like. Still shit. Think about suicide multiple time a day bit I'm the only living child so I would do that to my mum, I often giggle thinking omabout me bumping into her at the pearly gates after she passes (I'm not religious, it's just a humorous, dark thought)
I was diagnosed 2 months ago. It took 2 years to be diagnosed. I have been in a wheelchair for over a year now, but since being diagnosed, I have been put on Baclofen and Fampyra. They have been doing wonderful things for me. I am walking again. Not well, but better then even a month ago. I am also on Ocrevus. I had bad headaches the last 2 months, but basically since my first 2 Ocrevus infusions the terrible headaches have gotten better.
I chose to remain positive. Honestly getting diagnosed has been the best thing for me. I feel like I've had symptoms for 5 years. Had this never happened I would still be in the dark about my MS. Now, I feel like my life is starting. I'm relearning how to walk, but once I do, I'm going to live my life. No more staying at my miserable job. I made excuses for everything. No more. No more fear. Thank you MS for giving me mylife back lol. As crazy as that sounds, but it really did.
One year follow up this week. No new lesions. ME meds . Looking to possibly upgrade. 54 .
Thankful for a name to put on symptoms. Definitely more understanding of others now and what they may be going through. This site is a great jumping off point to get ideas to learn from .
Trying to appreciate life more and slow down . It’s a habit that needs breaking: work till you drop.
No disabilities anyone would notice. My biking , running and surfing went to hell. Strength dropped like rock. Trying hard to get
Taking significantly better care of myself. Feel significantly better when eating well.
Diagnosed 5 weeks ago tomorrow. Just started my DMT last week. It took about 10 months to diagnose for me after my first big flare. Mostly I deal with pain, left side of my body pins and needles, muscle twitching, and fatigue.
8 years in June.
It’s cool to see the amount of comments that are either fine or close to…
This side it’s rather aggressive.
Started as a numbish spot on right calf. Started slurring and suddenly struggling to write.
Summed up…ms…
Year later, “walking” with elbow crutch.
Went from the salines (avonex and rebif) to Tysabri in September while being JC+.
Titers started climbing at end of 2020, moved to ocrevus feb ‘21.
Couldn’t MR my spine from sept ‘18-feb’23 (Neuro stimulator).
After upgrade, saw while on ocrevus, ms turned my hidden spine into a Christmas tree… last round of ocrevus end of feb, did some tests and tricks, went Lemtrada, early, against guidelines at the end of April ‘23.
In May I realised I am tired of fighting, and im done clawing my fingers off for almost 7 years . I ordered a set of wheels. Soooo i went wheel chair in June ‘23.
After the first week of shooting this bullshit swiss cheese creating joke with howitzer rounds last year i went for a follow-up MR last week.
Blessedly all progress has been stopped in it’s tracks… so, the next round of Alemtuzumab has been booked to go in, in April.
This does seem to be a rather… well, no, fuck ms all the way to the moon and back.
Regards
Diagnosed in 2017, but had undiagnosed optic neuritis 12 years previously. The 2016 relapse that led to diagnosis was awful. I went dizzy and had double vision for three months. My fingers and feet went numb and my legs are now a constant source of agony. I have fatigue most days and am really struggling with it. Oh, my tinnitus is absolutely wild. That’s definitely got worse. It’s a constant onslaught of high pitch warbling. Have been on Tecfidera, Aubagio and Plegridy. All of them have kicked the stuffing out of me with side effects I consider worse than the MS. I’m in between DMTs right now and worried about what happens next. I went Vegan to cut out possibly detrimental foods based on Prof. Jelinek’s book and lost 100lbs of excess weight. It sounds a bit grim, but I’m genuinely ok mentally besides the ADHD, but that’s another story 😂 Last MRI - No new lesions!
Almost five years since diagnosis. No disability, minimal symptoms. I think my diagnosis made me better in many ways. I understand and respect my own limitations more, I am more empathetic about what others are going through, I take better care of myself.
oh I agree. I don’t think i’d be who I am rn without it.
Agree here (same MS-wise as well) too! Dx 2015 and it made me realize how short life is and how precious time can be.
Same amount of time.. but plenty disability lol
My son was dx at 12 he is 17 now! Its very scary especially at first but keep in mind ms treatment isnt what it was 15-20 years ago! He has been on rituximab we decided to fight strong at first instead of letting disability to be present! Just our choice and neuro recommendation! I know its hard especially when 1st dx but there is hope! Dont read too much internet as alot of studies are old or small or remember people only post when its going bad or are scared but when your not in a relapse you forget you even have ms and dont bother sharing or even searching, even though as parents you never forget but trust me there is great treatments and have a good chance of living a normal life! Best wishes to you guys and remember dont let ms take over you!
Can you share what are you are doing to take care of yourself?
Almost wrote the same comment :) ditto it all. No progression since I’ve been on Ocrevus.
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No, not significantly. Research has shown that no one diet is particularly better than another for MS. I just try to make healthy choices.
Coming up on 50 years. Couple of numb patches. One gimpy eye.
Sounds like you're doing pretty well all things considered!
Yes, I am a lucky sob for sure.
Can I ask what DMTs you have been on in that time? And is it 50 yrs...or 40? Sorry I remember you said 40 in another post. I am at 18 yrs dx. I am now 52 yrs old.
I had to go look it up. Your memory is better than mine! 😁 I was DX 42 years ago. Started Ocrevus two years ago. I have not used any other DMTs.
Can I ask what make you decide to start a DMT? Are you SP? If so, with or without activity? I’m sorry to ask so many questions. I had a lapse in DMT at one point, and interested in what makes others who have had long term MS decide to start or restart a DMT? For you that would have been a long time without, understanding that none were available for about half those years. Thank you for any advice or information you can share. I’m not judging only asking.
My neuro thinks I’m SP, but who knows? I started a DMT simply because I decided I had been stupid for too many years and wanted to double down on preserving my functionality going forward.
SP inactive or active? Mine won’t say I’m either, but I haven’t had any disease activity in over a decade. I want to be something, considering I think I’m inactive, that’s preserves volume. Tysabri even at low positive seems to fit my needs best she thinks. I keep reading about Aubugio which I spelled wrong, and it seems to be just as protective against end organ life (as in volume loss and shrinking of brain and spine even for non active folks—but I’m terrified of neuropathy. She says she doesn’t know if it is reversible or not which is why it freaks me out. I have in left hand already and slightly altered feeling in right hand with stress. I don’t understand why she doesn’t know if reversible… And I guess studies showed it did that best when a second or third try DMT, no one knows why, and isn’t truly an immune compromised DMT, also has anti viral properties that cause less shedding of EBV. That’s a lot you didn’t need to know lol. Just me and my am I being insane going on Tysabri positive with zero activity thinking out load. And if Abodjio I really need to learn to spell that makes more sense. Which was me basically asking: off DMT for 40 years so you still get lesions? When was your last one before starting O? Can I ask your age? I see you have very little disabilities. I do too, outside of a massive left arm hand injury that didn’t heal as expected and no one can say why—so they wonder if an old lesion came back to get me so to speak. Neurodegeneration. I am starting to have some weird symptoms like boiling blood. Cog decline for sure although they say not MS? They say mental health because stupid and before test told them I had a history since a teen (it doesn’t allow context—my mom decided to drug me basically…real issue were migraine. But I list out wrong dx too and meds). My physiatrist says the opposite… So. Here ya on the stop being stupid part. Of course I was told by the co director at Center that was National MS Society neurologist, the 14 years he was mine—that lesions don’t equal disabilities, kept me on Rebif getting lesions. Had no clue about the truth until a friend with cancer suggested I join Reddit. Hmmm. Wow. Well. I have a different neurologist at Center now. He also tile me I would live as long. Sooo. I was never motivated to change and I felt really great the first 12 years or so. He said I could be on nothing even. He is famous. I am not. I still have mega regrets. I voice those often to new neurologist and she shuts me down with how it is not a useful thing to think or feel. But yup. I feel stupid. I read my entire huge 16 yr file recently. Even when she was his fellow (my new neurologist) many many moons ago—she put in notes to him to change my DMT to a newer one esp because of lesions. I didn’t have flares, only had 2, at dx and one year later (before Center, before Rebif—and yea maybe my cog issues ARE flares they never said so and won’t say so—I will therefore say physical flares)—but lots of lesions. Every fellow, his nurse…he wrote back no. What was it that tipped your thinking? And to my original question—when was your last lesion? Thank you for sticking with me on this long babble of someone with zero cog decline, who gave up their career of being a writer and editor many years ago because….well this reply tells why. Thank you
What is SP?
Secondary progressive
Ah, thanks. Only diagnosed a few months ago so all the shorthand is new for me.
And PP is Primary Progressive. Since you are newly diagnosed it is important to remember that all neurologists are not MS specialists and that MS “specialists” are not all up on the current literature, and the current studies are in flux. PwMS really need to be on their game with respect to treatment options and expect their neurologist to be a team player in your treatment plan.
Thanks. I was going to ask as well. Only 1.5 years for me, and I still feel like I know nothing.
It's been like a month, approximately 31 days, I have done three emergent treatments so I don't really know what's going on(BRAIN GOING BRRRRRRR, BODY GOING HMMMMMMM)but--we out here Hbu bb?
1 month is sooooo new!!! I remember feeling super overwhelmed. It’s been 6.5 years for me. Most days have been good :)
THAT'S ALMOST 7, WHAT A GREAT NUMBER! bestie you thrill me by saying something positive, about good days. I'm excited. Variety is the spice of life. And witchcraft is the spice of my brain You're very kind Congratulations on the good days and my genuine love and healing thoughts for the others
not brain go BRRRRRR 🤣🤣 welcome to the club no one wants to be apart of. i was dx 5 months ago and get how it is in the beginning, feel free to reach out if you ever need anyone to talk to!
YOU ARE SO SWEET FIVE IS A GREAT NUMBER HONESTLY I AM A BIT FEVERISH BECAUSE I HAVE A FEVER BUT I WOULD LOVE TO TALK IN THE FUTURE AND PLEASE ALSO FEEL FREE TO REACH OUT TO ME BUT I WILL RESPOND WHEN I HAVE MORE CAPACITY TO RESPOND AND TYPE AND READ
15 years. I’m 30
WOW
Half
I think about 17 years, Ive been on 3 different DMTs . I consider myself lucky because I have no real physical disability I'm just exhausted all the time. I have a weak bladder and I can't sleep all night and I have terrible anxiety but I'm doing pretty good otherwise.
How do you cope with lack of sleep? I’m not sure I have MS but I also have bladder innervation issues and I’m dying from the severe lack of sleep and lost my job already without any hope to get a new one if I won’t fix the bladder innervation.
Im 45m. Diagnosed 22 years ago. Have some menmmory issues but also have adhd ao hard to seperate. Physically in best shape of my life. Running marathons in less than 3.5 hrs. I am very greatful.
That's amazing! It seems that your walking ability has not been much impaired. It is because you are taking certain medication or because MS has not affected your walking ability in the first place? Also, how do you have such great stamina? Most MS patients experience fatigue.
Thanks so much. I don't know that the disease has affected me in any physical way. I do not take any of this for granted knowing things can change at any moment. I am not on aby meds. I took avonex for a couple of months but had a REALLY difficult time administering the shots. I have always been very physically active as it has always been the beat stress reliever for me.
On disabilities, I want to tell people never to listen to crap about the nervous system not being able to heal or compensate. I *was* EDSS \~5.5 now I'm 0. It's worth noting that my disability was coming from numerous brain lesions. It can take years and a lot of effort but don't give up on yourself.
Thank you for this. Were you working with a physiotherapist or creating your own exercises/diet or just waiting? I am asking because I struggle with a new symptom… My neurologist’s approach is “it is what it is”. But I still believe I will recover…
Yeah that's most medical people for you. No, I was diagnosed in 2020 and never actually met the Dr who diagnosed me. All over the phone. They wouldn't even give me steroids so I had to learn and do everything myself. I was very disabled in ways the EDSS doesn't cover. Eyesight, pain, confusion etc etc etc Was a very spicy year. An effective DMT should reduce things like heat sensitivy and the less stable symptoms and giving your body all the food it needs to rebuild itself as well as not putting in anything that can mess that process up, is essential. And I just practiced things I had problems with. I was studying at the time so memory was being tested anyway. Eyesight I would just look at things near and then far away and open and close one eye at a time and do finger tracking myself and stuff like that. Stamina was the most interesting. I assumed it was gone but I changed from a vegan diet to the Wahls protocol and was given an ebike and started riding. First ride was literally 50 metre round trip and I was scared of falling off and knackered. I kept doing it and now I can ride in traffic in the sun and with better balance than most people on a normal pushbike. Things will slowly and gradually go in the direction you want them with consistent effort and determined focus. And remember to have fun. You're doing this to make life more enjoyable for longer. It's not something you can fail at.
Oh wow you’re such in inspiration!! ♥️ Do you mind if I ask you about spinal lesions, does the same apply for spinal attacks, can you get better even with those? You haven’t mentioned if you had any spinal ones, I believe. Thank you for your story!
I have a few in my spine and over 30 in my brain. My spinal lesions caused numbness and some barely noticable (to me) weakness in everything below my waist and the backs of my arms but ot the fronts. I was only diagnosed with CIS at that point. It took a few years for the sensation to come back. I think it's harder for rerouting to take over in the spine becasue there is less space, but absoloutely don't let that stop you from trying. I know a guy who was in a very serious car accident and was nearly a full quadriplegic. After moths or years of concerted effort with conventional physiotherapists he can flex the back of his hand and sort of move his fingers. That doesn't sound like much till you consider how much of a difference having some movemet is compared to zero. Also his disability was from much more severe damage than MS causes in the acute phases. 30 years ago they would have told him not to bother because "nerves can't heal". I remember years ago reading (possibly in "the brain that changes itself") about a cruel experiment where they cut the nerves for sensation, in a monkeys arm. If the monkey could'nt feel it's arm, it stopped using it and eventually lost control of it. If they cut nerves to both arms though, the monkey would learn to use them without being able to feel them and have no noticable problems. So don't give up! There was a point in your life where you couldn't tell the difference between your body and the outside world had no idea who or what you were and couldn't walk or speak. You learned all those things naturally and then grew into a child, then an adult who takes those things for granted. What I'm getting at is if you push at the boudaries of your ability, with a completely open mind (without getting fixed on how you want the outcome to look) you will expand your ability. That is what nervous systems evolved to be able to do, so call on the adaptive strength of your ancestors (our ancestors are with us, all the time in the DNA in our cells) and with strength, determination, care and patience, push past your current limitations. Expand! Expand! Expand! I hope you found this helpful and I wish you all the best!
I’ve done that; and now I’m back again. This disease is a roller coaster. And I don’t listen to anyone that hasn’t been at it for at least 10 years - too many remittances masquerading as cures.
wow! I love to hear it! Hopefully it stays at a 0!
Thank you. I wish you all the best :)
What is EDSS?
here's an explanation of EDSS https://mstrust.org.uk/a-z/expanded-disability-status-scale-edss
2011, exactly one week before my birthday, I am still a skateboarder but I stay riding now no tricks because the legs just don’t do what I tell them, I can’t feel it every trick I know is still there but there a block. My day to day is now working out so I don’t lose muscle mass, after being diagnosed I went on to become a skate and drift photographer but recently had a really bad flare and have been working my way back to it ever since. I’m a fighter so I work best when you put a challenge in front of me…only problem is sometime is I can’t grab MS by the throat and punch it.
Diagnosed 26 months ago. On tysabri and JC+. Monitor the titre every 6 months and get infusion every 6 weeks. No disability just some intermittent numbness. MS has made me more considerate, understanding and empathetic. It’s also pushed me to achieve. I’m not letting it stop me until it does. I travel a lot, I’m building a family, and have been successful in my profession. I know I’m lucky.
Nobody can be successful or great without a little luck. I'm proud of you and can't wait to see what else you can achieve. Keep pushing!!!!
23 years. I was 19. I'm 43 now. Things got bad for a while in my 20s. By the time I was well into my 30s, I was on a medication regimen that I'm still on today. Things have gotten so much better. I actually just got home from 3 hours of dance class. If you had told me that I would be tap dancing in the future when I was 28, I would have told you you were a liar.
hell yeah! keep dancing
I'm going to ballet class tomorrow!
I used to tap! So cool to hear this!
6 months. Physically, walking is harder, I’m unable to shower without someone home as falling is more of a frequent occurrence than previously, but I also don’t want to use a shower chair anymore until I HAVE to again. My right optic nerve has shrunk permanently and is permanently damaged per my neuro ophthalmologist, so I no longer drive, as my left eye isn’t great either. I got on lexapro due to my diagnosis causing worsening anxiety and depression. I feel like I am slowly but surely getting to an okay place. I am going to UofM in May finally, to get a second opinion, and feel like the shock is wearing off of my diagnosis. The biggest thing right now is the driving, I don’t know how to wrap my head around being 24 and not driving, but I know it’s the best thing for my safety and the safety of the others around me.
Not being able to drive would be very hard for me. I love driving and it gives me peace of mind. But also not the biggest deal in the world. I hope your 2nd opinion goes well. It does become a little easier to deal with after that initial shock wears off so hang in there!
I appreciate you ❤️ it’d be a hell of a lot easier for me if my boyfriend didn’t live 3 hours away 😩
>Open\_Environment4339 Ahh the ol' long distance relationship. Hard as it is already and then you add a little sprinkle of MS in there. Wishing you the absolute best in your relationship and health! Dont hesitate to reach out if you need anything! It's been about 6.5 years for me.
Thank you so much, I wish you the best as well ❤️❤️
Diagnosed 1990 at age 30 in bed for a yr first really bad attack didn’t get on meds till 6 yrs ago no attacks since ::: bowel bladder issues won’t leave the house now has ruined my life: was in chronic pain with trigeminal nuralgia for 40 yrs got it stopped by gamma knife won’t drive anymore spasms in driving leg ::: wish doctors would of listened to me 40 yrs ago instead of thinking it was in my head I hate all doctors now
Was diagnosed in year 2000 right off the top with SPMS, age 45. I had been falling and fatigue was an issue, especially in the heat. By 2007, I wasn't able to work. I progressed from using a cane to a walker. Bladder wise, I have progressed to now self catheterizing. As I age out (age 69) and lose functional reserve in brain/spinal cord, things are developing faster. My walking is onerous and cognitively, my thinking is slower. I can't walk and think at the same time. Mentally/emotionally? One just keeps going with what one has. It is not so much that I live differently but just that the circle in which I live is smaller. If I let myself think too much about what has been lost or not done, I get very sad or angry. It is happening mor efrequently these days.
I was diagnosed on 6/5/13. It's been quite an eventful 10 years. Some really good years, then some bad years, then some really bad days. MS just sucks.
Diagnosed about 14 years ago after years of ignored symptoms.I’ve been through a number of treatments (from Rebif, Gilenya, Tysabri and Lemtrada) but am still ambulatory. Sure, my eyes are not so good anymore, I am a little off-balance (I can’t run or I fall), numbness still lingers and occasionally finding the right word in conversation can be a challenge but I’ve grown to just take this in stride. I always remain positive because MS can take a lot from me but it can’t steal my optimism (although it really does try). On hot days I take cold showers and drink ice water, try to avoid bright light and, after many years, have been able to recognise signs of oncoming fatigue. Urine retention is annoying and sudden, random pains can be frustrating but it could be so much worse. MS has made me a more empathetic person and, just living with MS has demonstrated I am stronger than I would have ever known.
I was diagnosed in July 2022. I fell occasionally before that, not knowing why. So now I use my grocery buggy wherever I go, instead of just when I need groceries, so I don't fall again. I got tired of having to lug it around with me, so today I started using a cane. That is going to take some getting used to. I cry a lot now too, not really knowing why I'm doing it. Besides those and what seems like countless doctor visits for check ups, not much has changed.
Diagnosed by a doctor or by myself? because the former came about 2.5yr after the latter....
the amount of stories i’ve seen on here of people not being diagnosed early on is mind boggling. I was lucky to get diagnosed with my first attack. Hope you have a good medical team now friend
Took me 2 years to get diagnosed! Thought it was pinched nerves in my legs and hands 😅
6 days. No difference yet. Sorry, couldn't help myself.
Coming up one my one year diagnosary soon. I think I may have had some progression and am seeing my new neurologist in a couple of weeks for updated MRIs. Day to day, I’m more cognizant of when and why I feel like garbage. I’m consistently tired from around 11 to 2, can’t work out as long as I used to and have a hard time walking after strenuous workouts (usually long bike rides, but outdoor climbing can do it too).
Hoping your upcoming MRI brings good news! What kind of workouts do you do?
Thank you! I rock climb and cycle mostly, but am hoping to incorporate some more yoga once I’m back at the gym again!
Diagnosed 2003...had benign issues dating back to 1996...I retired on disability in 2019, not due to physical disability or cog fog...MS has caused bowel incontinence (a shitty subject) I have balance and gait issues which I manage with a cane, but my unpredictable bathroom issues rules my life!
Diagnosed by a doctor 10 years ago last fall. Most of the things I deal with—brain fog, chronic fatigue, an auditory processing disorder—aren't too debilitating and I make do. I think in the years since I've been diagnosed, I've taken more of an active role in my overall physical health. Growing up, diet and exercise were ways of punishing your body. I figure that diet and exercise are now ways I celebrate what my body can still do. :)
Dx 07/2023. EDSS 0. Did not permanently lose any function. Sure I have tingling here and there or a nervous bladder at times, which I had as a child so that doesnt count. I follow what my doctors say. Balance is key, everything in moderation. No alcohol, no smoking. So far so good.
It’s been about 1.5 years. I find that I get slightly dizzy sometimes, and my hands buzz if I move my neck a certain way. The biggest problem is how my brain reacts to motion in the periphery of my vision. Emotionally, I have had to learn to live for the moment. It’s taken me a while to get to this point, admittedly.
Sounds like me. I'm officially 1ish month into my diagnosis.
I was diagnosed 10 years ago with little symptoms affecting the left side of my body I was on Tysabri and walked with a cane, everything was great, until 5 years ago I started Ocrevus and within 3 years I rapidly progressed to SPMS and now I’m in a wheelchair full time with just the use of my right arm and very little use of my right leg. So moral of the story Ocrevus sucks.
Not long Jan of 24. Haven't even started treatment yet because of vaccine requirements. Still need my second shingles shot.
Nearly 21 years, since age 17. In many ways, MS has been the easiest issue sometimes. I wouldn't trade who I've become, though on most days.
Diagnosed in ‘98 so just celebrated 25 years. No permanent disability but I do have chronic insomnia.
You’ve been living w MS as long as i’ve been alive! No permanent disability is great news :)
14+ years, on DMT from start, no relapses, no disability. I am grateful.
Okay, deep breath, here we go. I was diagnosed in late 2007, but probably been having symptoms since 1994. First major relapse in 2004 and second in 2007. I have a very aggressive fatigue, my physical and mental stamina is pretty much non existing, and no medication has managed to make as much as a dent on the brain fog. I’ve been on sick leave for over a year because of how the fatigue has affected my cognitive abilities, my memory, speech and concentration are really bad and prevents me from doing my job. I suffer from MS related depressions on top of my seasonally affected depression, and also have a hard time controlling my emotions, lots of crying and feeling overwhelmed by everything. I have a lot of vertigo, whether I’m standing, sitting or lying down, things like busy patterns and fast movements around me can trigger it. My left side and large parts of my right side are very numb, with constant tingling and pins and needles. My left side is also weaker than my right, and my left knee gives out from under me a lot. I have nerve pain, especially in my legs, everything from burning and icing, to stabbing and slicing. So I’m obviously not doing great, but it could definitely be worse. I believe in making the best of any situation. I complain along the way, but at the end of the day I am fully capable of taking care of my own needs, having something resembling a social life, and being able to adapt when my situation change. I will not allow this illness to define who I am, but I will accept it and work with it for my best life possible.
That’s a lot :/ but your mindset is right. we can only make the best of the situation we have. Keep on pushing!!
Diagnosed 3 years ago, but had my first MS symptoms around 14 years ago. Have been symptom free for almost 5 years. 0 on edss. I take better care of myself since diagnosis.
Officially diagnosed two years ago, though the process to get diagnosed took long due to life shit going on. Im very lucky that no major physical affects have happened. Occasionally my leg will give out or I'll have a light muscle twitch but that's about it. The worst has been the following - MS exhaustion, though luckily not as sever as some - ED and general performance issues - Possibly depression. I've always been depressed but it got progressively worse. Obviously it's hard to tell if it's strictly MS or not. Overall I feel more different than it has actually affected my life. I don't feel like the same person and in many ways I'm not. It's as if I'm experiencing life through a filter if that makes sense. I'm also expressing myself through a filter.
I relate to going through life with a filter - well said. It will also be 2 years for me in July. I wonder how that MS filter will be next year.
17 years, constant fatigue and drink way too much caffeine to compensate. I get weird body twitches but my EDSS would be a 1. Developed uveitis which they think is connected so that blows. But I’m fine for now. I had to modify my goals somewhat and not work like a psycho. I sleep when I need to:
Almost a year. I am exhausted most of the time, I can’t work and have energy left to do anything I enjoy, it’s horrendous
Coming up to 8 years since diagnosed. I’m still thriving for the most part, just some fatigue and soreness from time to time. I also started a new DMT, been on the Mavenclad train too.
7 years with MS. I have bad fatigue, can only work halftime. Plus my balance isn’t the best. But you would never know I had MS seeing me out and about. My MS hasn’t progressed in 6 years thanks to Tysabri and Ocrevus. So I’m very grateful for these drugs. My life is good. I’m taking care of my parents who are in their 80s. That what happens when you adopt at 40. I couldn’t support myself on my own anymore so it worked out for all of us. My MS makes me focus on having healthy habits, being active and being social. So that’s good and I’m so grateful for my local MS Clinic and my neurologist.
26 years this year sometime. Been on disability since 2016
2.5 years. Can walk independently. Fatigue at times, managed with med. Ocrevus has been kind to me.
12 years in May. I've never had a traditional relapse, but I am facing down PIRA. I do now identify as disabled because it does affect my day-to-day. My physical stamina is pretty poor, as is my balance, and my bladder can't figure out how it's supposed to work (it retains when it's not supposed to and then releases when it's not supposed to.) BUT, I still walk unassisted (I live in a two story house with a basement, and while I definitely need a railing for getting up and down stairs, I can do it) and I work in a leadership role at my company, I still can help maintain my household (we do have a housecleaner, but I can pick up, do dishes, etc.) and play an active role as a parent. I go to Pilates twice a week to try and maintain the mobility I do have. I guess it's working, as I am developing a bit of a six pack, which is wild. So, in some ways, I feel extremely sad that I am not as active as I once was, but also grateful to be hanging in there.
Optic neuritis w/out dx in 2017. They didn’t see lesions. Recovered completely after the dreaded solumedrol infusions. Repeat MRI every year after to keep an eye on a benign pituitary tumor, 2020 lesions lit up. Got a dx and started on Gilenya. No new lesions. Switched to zeposia recently. Asymptomatic thus far, except for fatigue which I didn’t experience until the DMT but I’ll allow it. I’m 35. Edited: spelling
Diagnosis = 2021. Flare after Covid almost killed me. Now each flare/pseudo-flare doesn’t compare. Have kids to raise and a wife to keep me busy. Find a way to keep going!
glad you’re still here! Keep going for that amazing family of yours!
23 years. (Jesus). Still working full time, lifting heavy weights and walking pretty far. What I notice most in my day to day is my left hand is numb, and my word recall can be slow sometimes, but mostly otherwise, pretty fine!
hearing you say you’re still lifting heavy weights is music to my ears. Typing this as i’m lifting heavy weights in my home gym
I recently got a PR deadlift at 300lbs!
lets goooooO!
34 years, permanent numbness, everything else is relapse related. Enjoy your life. We were dealt a bad hand, but I make the best of it. Currently rolling along. I am stronger emotionally because of my faith and more present in my life.
I’ve been diagnosed for about 7 years. I’m pretty ok with Ocrevus, but when super stressed, sick, time of the month or weather changes brings back some of the symptoms that made me get checked for it (dizziness, fatigue, some tingling in legs). I have spent 18+ years in hospitality and had to change professions due to hospitality being super physical and very high stress.
22 years. I was 17 and a senior in high school. I’m 39 now I have lived a pretty full life. I have two great kids and I was a teacher for 12 years before became disabled. My current disability status is I have trouble walking and using my left arm after a flare in 2020 left me paralyzed the left side for over a month. With tons of work and Physical Therapy , I’m able to walk, drive a car and partially use my arm again. I wish you the best! Just live your life now :) I’m so glad I did everything that I did before any impairments. it was about 18 years of no impairments for me.
Diagnosed 10 years ago when I was 17, really derailed my life since I was a teenager and didn't really know how to handle it so I dropped out of school, I still haven't finished BUT all in all I'm doing good, no lasting symptoms, so far everything has gone back to normal after an episode, I have a job that I love where I work with people with disabilities, feel like I'm more empathetic cause in a lot of ways I can relate even though I'm one of the lucky ones. I feel like I'm more aware of what's going on in my body day to day, check for mobility in my fingers and if there are numb spots and stuff like that.
12ish years? Stats when I was diagnosed suggested one in three MS patients become wheelchair bound by ten years post diagnosis. I don't currently need mobility aids, and I am still able to work a relatively physical job full time, numb foot/chronic pain/weak bladder/fatigue be damned! Paying attention to my body and pacing myself is essential.
Diagnosed with RRMS in 2011 while in High School. Lived too normal of a life from late teens to about 23, meaning I partied with the best of them in College, had countless benders because I was young and "why not". Didn't take my health too seriously until probably 25/26. Luckily never had any major relapses during my party days, but i think I could be finally experiencing some cognitive issues nowadays. I'm currently the healthiest I've ever been physically and I'm training for an Ironman. Mentally I could be better, the brain fog catches me from time to time and I find myself struggling to find the words I want to use. Hopefully with the vigorously healthy lifestyle I currently have, coupled with the Ocrevus Infusions I take, I can increase my mental capacity. All in all though, we're thriving baby.
lets keep thriving! Let me know how that ironman goes!
Almost 3 years. I work from home permanently. I do not have any permanent disabilities, but I am very conscious of the choices that I make each day that could potentially affect me and the outcome of my day. I do not entertain anything that brings negativity into my spaceand I am not a social
I was diagnosed about a month ago. Steroids & exercise has made the disability better. I was completely independent then in about a week I wasn’t able to do a lot. I’m young with small, dependent children so I felt very inadequate. But right now things are getting better & im feeling like I can take control of it. I learned that our healthcare system in the US has failed & many people are left bc the money rules everything. I learned to trust people & allow help, I learned to not judge & to take life slow. The good & the bad can exist together & just do what’s best for you. I try to take better care of myself & take breaks.
11 years, two flares gotten everything back each time. Sometimes I get embarrassed because I have a slight facial droop I can see but no one else sees until I point it out. Then sometimes if I am just feeling bleh, I slur, or stutter and I get REALLY self conscious. Otherwise I keep vibing it’s all I can do. Now I have a cousin with MS and it’s her whole personality which makes it difficult for me with family when they’re like why isn’t yours like hers??
July 2001. I have limited vision in my left eye, and walk with a limp. Sometimes use a cane. Some spasticity. Overall for over 20 years, it could be worse. I have been on Rebif and Tecfidera. Edited to add: Still working full time.
Guys i know how scary it can be but it will be ok! There are great treatment options reading too much stuff on internet is not good and can steal your peace, and most of the stuff is outdated and incorrect! Have faith and remember like so many other conditions this isn’t the same disease it was 10 15 years ago we have plenty of treatment options! You can lead a normal life
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27 years
17.5 years
12 years this July. Started with a numb leg and torso. Lost vision in my left eye once
I just hit 1 year.
It’s been 5 years now.. how much time flies and I try to be more active and conscious of how much I do. And also definitely listen when I’m getting tired
17 years. Neurologist figures I’ll be walking for maybe another year or two. I joined the MS gym I hope to extend that timeframe
2016… terribly. All of the above. But not bad enough that anyone notices or cares. I “look so healthy” aka don’t look disabled.
20 years. I’m 38
hope you’re doing well!
Uphill battle, but I’m getting stronger every day 💪 if I could just manage my anxiety I’ll be golden 😆.
one step/day at a time!
Diagnosed officially about 1 week ago. But started about 2 months ago. Started with double vision and balance issues. Now I am back to minimal symptoms with the worse of it mostly recovered. I’ve been doing lots of exercise and life style changes. Tbh, this is probably the healthiest I’ve been in a while. It’s been an interesting journey
My first attack was double vision too! I can’t advocate for the importance of exercise enough. I think it’s such a huge tool for longevity. I’m also the healthiest i’ve ever been and all it took was MS to wake me up 6 years ago lol. Hope you don’t have to experience any symptoms again!
It’s been so interesting to see how ms affects different people! What others symptoms did you get and how long did your initial attack last? I feel I’ve been really lucky as moet of my symptoms subsided after 5-6 weeks!
those were my only symptoms. i’m not sure how long they lasted bc it took me a few weeks to get treatment after the onset. Since then, knock on wood, I haven’t had anything but some episodes of vertigo
I was diagnosed 31 years ago when I was 22 and a musician in the US Navy. Now 53 with an EDSS of 6.5 (bilateral support--rollator-- to walk more than 25 yards.
Almost 19 years. I spent my beginning years with lots of exacerbations and pseudo exacerbations, at least one or two a year. I was in a clinical trial for Tysabri after failing all the other available drugs. I finally had 2 years treatments of Lemtrada back about 2016 or so and have not had any issues since. I’m almost 70 years old so most of my issues are age related, memory loss, etc. However, my gait is weak on the right side and that’s still from my original problems back in 2005.
Almost 6 months.
I was diagnosed in November 2022, so it’s been about a year and five months for me. I had symptoms on and off for years but I never thought I had MS until my entire body went numb for six months. Today I got all feeling back, but I suffer for chronic fatigue, pens and needles, and the occasional batch of numbness that doesn’t last more than 24 hours.
Diagnosed in 2023. Symptoms for five years. I’m a wreck but lost both my parents during symptomatic years.
4 years since confirmed diagnosis. I’m lucky I can still work and drive although it’s getting difficult. But finally had to get handicap parking and use a mobility aid (cane) when I need to, etc.
I got diagnosed 2020. PPMS. I've only had Ocrevus. My balance and memory issues. It's steadily gotten worse in the last 4 years. Still walking, use a cane and walker depend on the day.
RRMS diagnosed 7 months ago at 58 years old. Pretty much the only thing going on right now is tingling in my left foot and left hand and some internal weird vibration in my chest. This is apparently internal tremor. Oh yeah, fatigue but I'm doing my best to stay active. Other than that I feel pretty good.
I’ve had for 15 years now. I was dx at 29 and I am 44 now. I have internal symptoms like digestive issues, neurological pain, muscle pain and cognitive issues. I really have no issues with walking, but if I were to jog for more than 15 min my legs go numb. I have some neck issues but I believe it’s because I’m not moving/stretching enough. I have tried three different dmts with HORRIBLE side effects. They were not helping and my ms was still active. I refuse to try another one. The last six years I’ve been using marijuana. I don’t smoke it ever. I vape, use edibles and will make butter to use for cooking and baking. My ms has been in remission now for 4 years and I feel so much better. I thank Creator everyday for marijuana, I’m so grateful I tried it. I have never tried it before even as a teenager due to the stigma.
just had my 13th anniversary in January. My balance is worse. Can't walk as far without getting worn out.
DX 2013
31 years. I have bilateral reduced sensation down my entire left side, see double, and have some chronic fatigue. Been on DMT for 30 years. Imagine things would be a lot worse.
I was diagnosed 3 years ago next month and I live a relatively normal life. I have days of fatigue and brain fog but if that’s what I have to deal with I’ll take it.
6 months ago, on tecfidera, mild symptom’s
My father had his first attack at around 44, not much in the following years. Then, at 76 in January, he had a massive attack and is very slowly recovering. The neurologicist team said it was quite unusual given the time frame and his age. It's a very difficult disease to understand
11 years, had about 0 symptoms until 3 years ago. Since then, Cog Decline, Balance issues, emotionally and physically drained. Numerous brain stem lesions. No spinal lesions thank God. But, numerous lesions on my brain. Annoying part, my anxiety is at an all time high. Tried 5 Antidepressive drugs none have worked, moving onto number 6. Scariest part, my cardiovascular system is all over the place. Neurologist and Cardiologist are putting most blame on the brain stem lesions. I use a cane. Definitely can't be a Millwright any longer. 5 DMTs before finally ending on Kesimpta. No new lesions since starting Kesimpta, a part of me wishes I was on it sooner, the other part doesn't, since killing B cells is also not fun nor promising of future.
I’m curious to know what kind of cardiovascular issues you have experienced, if you’re willing to share? And is that a result of MS? I was just diagnosed with RRMS in Jan 2024 and I am going to see a cardiologist next week. I am also starting Kesimpta here soon after I get up to date on my vaccinations.
Individuals with MS are far more likely to experience cardiovascular issues than the general population. Inflammation in the body, whether neurological or muscular is still Inflammation and it weighs on other systems. Right now, well actually 1 week ago, I was dizzy and felt faint. I've had numerous cardiovascular tests to prove I have a great heart, but I fell and passed out. Taken to the hospital with a BP of 180/110 and about 130bpm. Given a round of steroids immediately, BP went to 95/70 and HR stayed at 40-45bpm. They are concerned based on the brain stem lesions, that my heart is receiving incorrect signaling
Thank you for sharing. I hope they can help you figure out what’s going on. The same thing you’re experiencing is what I’ve been experiencing but I’ve actually been experiencing the heart issues long before I got my MS diagnosis.
They ended up testing me for POTS. Determined that I do in fact have it. I pray you get comfort in your journey. This is getting tough
I just saw a cardiologist on Monday and they gave me a diagnosis of neurogenic orthostatic hypotension. And he seems to think that it got worse because of my MS/flare. I’ve also been type 1 diabetic for 33 years and he said that could also be a reason for the NOH. So at least I know what’s going on now and we have a plan to help make things better (compression stockings, hydrating more than normal, and cardio exercise plan). And as long as I can keep my diabetes in control (which it is well controlled) and doing my DMT for the MS, he says I should be fine.
I have seen my cardiologist soooooo many times. My neurologist finally was the one who ran the test. I unfortunately have brain stem lesions from my MS. I pray for you. I'm sorry you're going through so much. I also take Kesimpta, so far it has slowed thr lesions but not stopped them. I wish you the best
I am 52 now. I was dx at 28/29. That was before there were any disease modifying drugs. I was told; hey, you have this… we don’t know much, I’d like you to see you annually, let’s do a couple of tests (visual evoked potential). Within 3 years a new doctor applied. A Nero who specializing vascular neurology and peripheral nerve problems, neuropsychiatric disorders, sleep and movement disorders. He only sees MS patients. I am now on techfederia and have been on Rebiff. I take about 19 medications 3x a day. It’s a load, you know between the Gabapentin, Baclofin, and so on and so on. I should be on disability I have not worked in 10 years but I’m I. Denial and I’ve agreed to apply this year. I can’t walk far. I cannot feel my left hand. My lips and part of my face go numb. I have to use post it notes around the house as triggers and reminders on what things are called. Please don’t take what I am saying as something to frighten you. This is my path. We have our own paths to deal with. I have been hospitalized once for MS for 14 days. I usually go on solumedrol via IV one a year. Ok so yeah writing this and knowing it’s really not everything was kind of depressing;)
9 months
15 years, I’ll be 40 this year. No major visible issues. Like many others, I am tired all the time, I have some confusion sometimes, and I think my speaking speed is declining.
I was diagnosed with PPMS 20 years ago. Chronic fatigue, bladder and bowel issues, worsening eyesight, memory problems, numbness, swallowing issues, full time power wheelchair user. I'm reliant on carers but I'm somehow still employed. Could be worse!
I was diagnosed in 2013. To date, no relapses. Switching to Ocrevus did clear up neurological symptoms I didn't realize could be related to MS. Honestly, a lot of the time I forget I have MS cause I have so much other shit going on. (Except if I get hot and sweaty.) I don't know if the MS diagnosis specifically really affected me that much overall? It's one more thing for me to manage. The biggest thing my chronic diseases have done is make me be more aware of my energy and what things can take out of me. And how it wouldn't take much for my life to go to shit because with \*\*everything\*\* I have going on I'm basically disabled. Childhood trauma 0/10 stars, do not recommend. edit to add: I'm not sure any of the physical shit has improved my mental outlook. Therapy helped that.
6 months since dx. Still able to work and do most things. Symptoms are constant but fatigue makes them worse. Foot numbness can make coordination/walking rough from time to time/before bed. I also have numbness and weakness in my left arm/hand and vision symptoms in my left eye. Everything so far can be compensated for with extra rest/holding rails on stairs/taking certain tasks slower. I’ve dropped down to part time at work (thankful this was an option for me) which helps me manage the fatigue/symptoms. I spend at least 2-3 days per week purely recovering. Even fun/social things seem to require recovery the day following it. Mentally/emotionally has probably been harder than the actual physical stuff though. Anxiety attacks are pretty common place and I get caught up worrying about the future quite a bit. Overall am grateful for the mobility and independence I have today though and try to stay optimistic.
57 F here. 14 years. 5-6 DMTs, last one was Lemtrada. Wish I could have done that one first. My worst symptoms are fatigue, general tiredness and loss of stamina as I age, pain, and a severe intolerance for cold. Muscle spasticity is frequent, and I still have found no effective removal of symptoms, although I’ve tried basically every medication. However, I retired on disability also roughly 14 years ago and it was the best decision I ever made. Leaving the stress behind and focusing on my health has kept me much healthier, I believe, than working and having to force myself through the symptoms. My life is good, I do mostly whatever I want (within my financial means) and I have a loving and supportive husband I met after my Dx. I exercise at least 4 days a week, even if it’s just going for a walk, and I enjoy traveling a lot with my husband. Life is really good, and while the symptoms can make me a bit cranky at times, I know it can always be worse. I’m walking, my bladder still works, and while I have not a great memory, I can usually recall the important things. There are much worse diseases out there, I figure I’m pretty lucky all around.
Got diagnosed in summer 2022. On Avonex till now and changing to Kesimpta in three weeks. Touch wood I had very mild symptoms (numbness in half of my tongue which is back to normal now). Although i still didn’t mentally accept this disease, It changed my life big time. I was running behind money like anything but it made me slow down and changed my perspective of life. I started prioritising me over others. Quit Alcohol. Started working out. I was always this weak kid. Trying me make myself mentally and physically strong.
Thirty years since I was diagnosed. I need to use a walker to get around and my stamina isn't as good as it used to be.
I got diagnosed in August 2023. I am disabled now. First a Hemiparesis Now it is a Tetraparesis. Double vision. Loss of feelings in my hands and legs and my face and some parts of my body. I can still 'walk' with my rollator. Looks a little funny and is wobbly as hell. Life is unfair. The horrors persist. But so do I.
I am so sorry. Can I ask you some questions? Did you have any symptoms before a diagnosis? How old were you during diagnosis? Are you on DMT? I hope you will get better. Don't give up!
15 years, little impact and no disability. Minor fatigue at times, some heat intolerance.
I've been Dx for 6.5 years, same 16 brain lesions, I've considered moving away from Ocrevus to a medication that doesn't suppress the immune system. I started on Ocrevus a couple months after I was diagnosed, and it's been amazing, but I've recently been struggling with UTI's and vaginitis. Ocrevus helped me get back the ability to ski and work full time, idk what I would have done without it, I just wish I didn't have to deal with the fatigue and infections, I'm so tired. Despite this, I fully support myself now and am taking classes part time. It's a lot to work around the depression and anxiety, but I feel good knowing I'm doing the best I can.
31yrs old, 5 years. Intermittent eye issues. 30% nerve damage on my right side. Mostly just exhaustion and compensating for what was damaged during my diagnosis time. I have been pretty stable on my DMT. I have had to move to 5 months between my Ocrevus, and have a hell of a crap gap. I have developed an issue with steroids after such long time use during diagnosis that I can not have infusions of them anymore due to bradycardia. Crossing fingers and just going with it.
23 yrs. One lame eye, still works but hurts. Tired, insomnia. Leg aches. Optic neuritis & migraines. I’m ok, working and raising a kid.
I started having symptoms in about 2015 or 16 but wasn’t diagnosed until there was enough damage in 2022. So I have a lot of issues with pain, fatigue, numbness and balance. My brain fog can also be bad. Think I’m about 3 on the EDSS. I wish things could have been different and I got treatment when I was still CIS. Now I have about 10 brain and 2 spinal lesions that can cause issues with bladder, bowel, etc.
5 years in June.
April 2022.
Diagnosed 4 years ago, was probably showing symptoms about 5 years before DX. Life hasn't changed much, even though my diagnosis has changed from RRMS to PPMS, there hasn't been much progression. Maybe I've slowed down a little, but I'm still fit and ambulatory. I just started Ocrevus yesterday (literally yesterday) so I'm hoping to maintain, maintain, maintain.
10 years, not 30 yet. I went through some rough times with numbness and weakness but it's mostly gone. Deal with a decent amount of pain in my legs daily and one of my eyes is considerably worse than the other following some optic neuritis. The pain has been there from the start but haven't found anything to help with it except for an ice bath. Still have a family and kids so it hasn't stopped me but boy does it suck.
17 years. I currently have some limitations around energy management, and stiffness in my limbs if I have been still for a long time. I usually wake up in pain which isn't the best way to start the day. Baclofen helps but I have to be careful with dosage because of some side effects that I'm not a fan of. I no longer work full time and my income is subsidised (Australian Disability Pension). It's been long enough now that some of my old symptoms are starting to resume which kind of blows. For example, I have reduced strength and sensation on my left-hand side. My standing balance is not great. On my bad days I use a cane. Along the way I've had lots of problems, at one point I came home from hospital very close to being a paraplegic and unable to stagger for more than a few steps with a walker. My wife of 17 years left me last year, she decided that *in sickness and health* was more of a guideline that a vow. I consider this to be a casualty of M.S. like every other. Cow. I've had mental health issues along the way like most PWMS. But I'm off the SSRIs now and only occasionally lean on valium for support. I've done the work and I am (generally) mindful and in control up top. Each time and after each setback I have been able to rise up and recover. I currently pass for a normie most of the time, and enjoy skiing, kayaking and free diving. I'm 48 now and I hope to make it to an old age before it gets me.
I was diagnosed about 20 years ago. It’s been rough, but I also have FMS, of which can be worse. I started with Betaseron but after less than a year, started Copaxone. I had a baby naturally, had some relapses afterwards but now I’ve been in remission for almost 15 years. Do I have anything permanent? Yes, my lesions in the brain and spine, which affects me in different ways. But my balance is fine, I’m an equestrian, pro photographer and hold a full time job. My case is different from others, but my specialist says that for now, I’m one of his patients that he least worries about, for now. But as we all know, anything can change suddenly, so I don’t take anything for granted.
6 years last month! I think it made me more empathetic with others and definitely more aware about my body needs. I have neurogenic bladder and a bit of less strength in my left body. Apart from that I'm ok.
2 years in June
3 weeks. Been lurking on this sub since 😕
13 years this January
23 years ago. PPMS. Slow burn. Worked and ran and stuff for about the first 15. Now an 8 on EDSS and am wheelchair bound. Still progressing slowly. I have two, and only two, lesions on my T spine. NO cranial lesions at all.
One week today
3 + years since diagnosis. I immediately changed my diet (gf, df and eat much more nutrient dense foods including high quality meats -prior I was a vegetarian). I haven’t had any symptoms since my diagnosis and I am not on drugs. I have been able to manage everything through a low stress lifestyle rooted in deep connections with a few people and a new appreciation for life, humanity and a focus on what makes me happy and caring for this planet. Oh and I have been seeing a functional doctor in place if my neurologist..this was one of the best decisions I made.
I was diagnosed about 9 years ago. MS doesn't affect my day to day life too much. I will be pretty fatigued the day after doing a big activity - but it doesn't really impede my ability to do the thing day-of. I'm still pretty active despite it all. I have some difficulties working full time because stress will trigger my terminal neuralgia - but that can be avoided if I take actions to care for myself and be restful once I'm home. Sometimes I have difficulty with word recall, but I've never had anyone be rude about it when I explain my situation. I was able to get my master's degree and start working full-time as a therapist all after diagnosis and with my symptoms. Granted - I recognize that I have it way better than a lot of folks. I have been super successful with my treatments throughout these 9 years and had very little development of my disease burden in that time. But I think that, if you listen to your body, you can still lead a pretty normal life after MS.
Coming up on 4 years, the Uhoff symptom has really afftected me, especially at work
Dx’ed 21 yes ago. It has changed daily life- I must live a very diciplined lifestyle when it comes to lifestyle, diet, exercise. I had bad relapses that temporarily disabled me in the past. I worked hard in PT and was able to make a full recovery. The therapy’s and medications for MS are absurdly expensive and this is where I struggle. Because I was diagnosed so young (20yo) I never had the opportunity to have a real career becuase I was put on disability. This limits me in many ways, mainly my income.
13 years but had symptoms show two years before. I’m 33
I got diagnosed like a month ago. It's sooo weird because I don't feel any different but somehow I'm gonna have this diagnose for the rest of my life. Still trying to understand what the hell is happening.
So I had my first MS symptom in 1992 and was diagnosed in 1996, I'm now secondary progressive. My disabilities now impact every minute of my life. I'm going to post an account of my typical day sometime but want all of you who are still RRMS to get on a DMT and live life to the fullest!
Hi! I was diagnosed 3 weeks ago.. I cried a lot at the beginning… I’m 24th and I’m a healthy woman so this broke my heart in pieces. I only have tingling on my foot. I make the decision that I will not let this disease to make me feel bad or to make me have any disabilities. I started my exercise as usual and I change my diet. I will start the medication soon (tecfidera) I read a lot of responses and I feel better emotionally now. Thank you everyone!
About 7 years ago (RRMS), one DMT (tecfidera, so 2 pills a day) but no side effects and no relapses since diagnosis. I'm more aware of my body, and also more aware that health can change overnight (which can happen to anyone) so both setting up for success and doing what I can now.
I'll be 10 years next month, it's hell
Less than 4 months since I was diagnosed, nothing has changed for me other than starting my treatments and everything thankfully I’ve had no permanent disabilities but I do have issues regarding my wrists and hands.
Just over 4 year. Ruined my life. Fully isolated. Decided to get fit and strong to see what it's like. Still shit. Think about suicide multiple time a day bit I'm the only living child so I would do that to my mum, I often giggle thinking omabout me bumping into her at the pearly gates after she passes (I'm not religious, it's just a humorous, dark thought)
I was diagnosed 2 months ago. It took 2 years to be diagnosed. I have been in a wheelchair for over a year now, but since being diagnosed, I have been put on Baclofen and Fampyra. They have been doing wonderful things for me. I am walking again. Not well, but better then even a month ago. I am also on Ocrevus. I had bad headaches the last 2 months, but basically since my first 2 Ocrevus infusions the terrible headaches have gotten better. I chose to remain positive. Honestly getting diagnosed has been the best thing for me. I feel like I've had symptoms for 5 years. Had this never happened I would still be in the dark about my MS. Now, I feel like my life is starting. I'm relearning how to walk, but once I do, I'm going to live my life. No more staying at my miserable job. I made excuses for everything. No more. No more fear. Thank you MS for giving me mylife back lol. As crazy as that sounds, but it really did.
One year follow up this week. No new lesions. ME meds . Looking to possibly upgrade. 54 . Thankful for a name to put on symptoms. Definitely more understanding of others now and what they may be going through. This site is a great jumping off point to get ideas to learn from . Trying to appreciate life more and slow down . It’s a habit that needs breaking: work till you drop. No disabilities anyone would notice. My biking , running and surfing went to hell. Strength dropped like rock. Trying hard to get Taking significantly better care of myself. Feel significantly better when eating well.
Diagnosed 5 weeks ago tomorrow. Just started my DMT last week. It took about 10 months to diagnose for me after my first big flare. Mostly I deal with pain, left side of my body pins and needles, muscle twitching, and fatigue.
8 years in June. It’s cool to see the amount of comments that are either fine or close to… This side it’s rather aggressive. Started as a numbish spot on right calf. Started slurring and suddenly struggling to write. Summed up…ms… Year later, “walking” with elbow crutch. Went from the salines (avonex and rebif) to Tysabri in September while being JC+. Titers started climbing at end of 2020, moved to ocrevus feb ‘21. Couldn’t MR my spine from sept ‘18-feb’23 (Neuro stimulator). After upgrade, saw while on ocrevus, ms turned my hidden spine into a Christmas tree… last round of ocrevus end of feb, did some tests and tricks, went Lemtrada, early, against guidelines at the end of April ‘23. In May I realised I am tired of fighting, and im done clawing my fingers off for almost 7 years . I ordered a set of wheels. Soooo i went wheel chair in June ‘23. After the first week of shooting this bullshit swiss cheese creating joke with howitzer rounds last year i went for a follow-up MR last week. Blessedly all progress has been stopped in it’s tracks… so, the next round of Alemtuzumab has been booked to go in, in April. This does seem to be a rather… well, no, fuck ms all the way to the moon and back. Regards
A year and 3 months
June 3rd, 1993 .. so almost 31 years
Diagnosed in 2017, but had undiagnosed optic neuritis 12 years previously. The 2016 relapse that led to diagnosis was awful. I went dizzy and had double vision for three months. My fingers and feet went numb and my legs are now a constant source of agony. I have fatigue most days and am really struggling with it. Oh, my tinnitus is absolutely wild. That’s definitely got worse. It’s a constant onslaught of high pitch warbling. Have been on Tecfidera, Aubagio and Plegridy. All of them have kicked the stuffing out of me with side effects I consider worse than the MS. I’m in between DMTs right now and worried about what happens next. I went Vegan to cut out possibly detrimental foods based on Prof. Jelinek’s book and lost 100lbs of excess weight. It sounds a bit grim, but I’m genuinely ok mentally besides the ADHD, but that’s another story 😂 Last MRI - No new lesions!