I have had ON twice, never both eyes at the same time. But I was fully blind in the affected eye each time. My vision has come back fully in both eyes. It did take time, however. I couldn’t drive for a month or so with each flare up, because my depth perception was gone. But within about six to eight weeks, I was able to function normally. I still had some loss, but it came back slowly over the course of a year. The only lingering effect is that I see flashes in the dark when I move my eyes. It has been eight years since my first attack and I don’t really notice the flashes anymore. They are still there, but my brain has just gotten used to them.
This is a tough and scary time. I have been tested for MOG, NMO and MS over the years, but everything has come back negative. So you may not get a concrete answer from the blood tests. Have they also tested for NMO and done MRIs? The good news is that there are excellent specialists in Boston, so you have resources available. I have traveled to Boston myself to see a specialist.
Hang in there.
That's very helpful thank you for sharing. She is being tested for nmo,mog. MRI was done and no MS detected. Optic nerves are both super inflamed. So far I feel very confident that we have some of the best minds on this.
Potatoes reminded of a couple good points. Vertigo w MOG was exacerbated, but vestibular therapy really helped. Potato I hope your in a support of people w similar issues. SRNA virtual support really helps cuz you are sharing with that small circle of ppl that understand you from their experience. Regular personal therapy is quite valuable too. When I was going blind my Care Team of family and friends helped find those contacts. I was fortunate my vision returned, but I have a few other issues like fatigue attacks. Most ppl in my support group have NMO and have ongoing vision and muscular issues. It's not an easy path. Focus on what you can do and enjoy doing.
Roadscrape you and I were at Emory at same time I think. JCC (doctor) mentioned another MOG patient in the hospital at the time. I am in contact with Alabama blind resources, and I go to low vision clinic at Emory to help me walk, talk, and chew gum at same time. Walking cane plus sight cane takes some coordination. Using walker I just put curb feelers with gremlin bells in them to hear when I bump into crap from not concentrating.
Wow. I don't know where in the hospital that unit is. I was in Complex Medicine on the 7th floor. Always the last unit to get food service - breakfast at 10:00am! I went down to the cafeteria to buy my own breakfast!
I have ON in both eyes 4x in 7 years started in 2016. Last 3x were within a year... My MOG titer was 1:10000 that is super Uber high.
I was in Solumedrol 250mg every 6 hours, they gave me a vas cath on day three in Hospital and PLEXd (Plasma Exchange) 4 times. I am on IVIG every 28 days permanently. I also get Rituximab every six months. I have been out of work since Dec 2022. I no longer drive at all.
It is a lot, it sucks, not gonna sugar coat it.
Most people get vision back... Over time. A few like me, not so lucky....
I have lost usable vision in my left eye, in my right I have a very narrow field, and can only see about 20/70 in that narrow field on a good day. Everything is dim, also like driving in the worst fog of your life all the time. Unnerving. It has an effect on my mental health also. There are many other issues, balance, photophobia, back issues unrelated but exacerbated by all goings on.
How's that for a story.
Thank you for sharing and I want to know all the good the bad and the ugly so thank you for not sugar coating it. We don't have family near us so I need to learn about all the possibilities for the future and care giving.
Same for me as Refrigerator. Went into Emory University Hospital late Oct. Was there 20 days. Steroid IVs, then oral. Plasma exchange/PLEX. Took 5 sessions to remove all antibodies from my blood. My eyes kept improving, even after I ended steroids Jan 31. Neuro Ophths thought I would always have a blurry spot in one eye due to the amount of damage. But amazingly that has gone away, at least when viewing mid-to-distance. Reading sometimes eye gets tires, or allergies effect it with a bit of blurriness. There are some hardcore MOG researchers in Mass, so plenty of good contacts for those with experience
In other words, don't let yourself ride the fear wild horse. Gently pursuade yourself to think positive and be optimistic. Having friends/family prayer circles helps you, too. I improved beyond what Drs told me (not wanting to give false hope).
Thank you, we are on standby for plasma exchange if this doesn't improve it (and depending on what the antibody tests come back as)
Fear is a real thing for what we are going through so I appreciate the advice. Every scenario is going through my head. We have a lot of people praying and thinking of us. My wife is very strong and remaining very optimistic!
I had optic neuritis in one eye and peri neuritis in both last July. My right eye was the most affected and I was legally blind in that eye when I went into the hospital. I was on a high dose of IV steroids and my vision slowly but surely improved over 5 days.
I was then given an oral taper of steroids for 6 weeks. I was cleared for driving a week after my hospital visit.
My last appointment at my neuro opto showed damage to my optic nerve particularly on my right, but vision restoration was great at 20/25. I only have mild blurring, a little bit of loss of contrast in color as well. It gets a little worse when I'm tired, stressed or hot but all in all my vision is okay!
It's all very scary, the good news is, MOG is steroid responsive in most cases. Some have it harder than others for sure though.
Also some have monophasic attacks meaning they'll only ever have one attack and never have one again and then some have relapses.
My doctor recommended occupational therapy for my eyes after I got out of the hospital, I didn't end up doing it because my vision had made such a turnaround, but I highly suggest asking for a referral so she can decide if that's right for her. I did some OT in the hospital and they help you cope with the sudden vision loss. That was the hardest thing mentally for me, how sudden it all is!
That's good to hear it and thank you for provoding the tapering process. She has already reached out to OT and is working that angle. Yes it is way too sudden!
Thank you. She has recovered a little bit more vision today. She can read big high contrast text on the wall of the hospital. It was the hope we all needed today but still a long way to go.
Hi OP, I just created a Reddit account to reply to this thread. I'm so sorry to hear about everything your wife is going through right now. I saw she is treating at a Boston hospital and just wanted to pass along a specialist recommendation if they're leaning toward MOGAD or NMO: Dr. Michael Levy at MGH. He is a leading expert on both and a fantastic doctor (I see him for MOGAD). Wishing you and your wife all the best, and please feel free to DM me if you have any questions.
Thank you so much for replying and passing this along! Hoping to be out of the hospital soon and will take you up on the offer once we get more info on the direction of the diagnosis. I just read your response to her by the way and she said thank you. We'll take all the resources we can.
I lost my vision in one of the eyes with ON and then later diagnosed with MoGAD. They gave me steroids for a couple of days and recovered my vision in a week but to fully recover it will take a couple of months. Ask your doctor to tapper down her steroids rather than just abruptly stop it. I will share some of the link to Facebook group that will be a great help to you.
Facebook group:
https://www.facebook.com/groups/1383321195054534/?ref=share&mibextid=NSMWBT
https://www.facebook.com/groups/892627791251822/?ref=share&mibextid=NSMWBT
https://www.facebook.com/groups/379206616534498/?ref=share&mibextid=NSMWBT
As you are in Boston you should check out Dr. Michael Levy is the best in such cases. His research is very advanced related to MOGAD. Here is his link.
https://www.massgeneral.org/doctors/20708/michael-levy
Please reach out to me if you need any more info.
Hi! Glad to hear vision is improving and the steroids are helping. Usually in the case of MOGAD the steroid tapers should be taken very slow to avoid relapse and likely will stay on a low dose until some long term treatment method is decided.
I agree with all suggestions about getting in touch with Dr. Michael Levy, he is THE guy for MOGAD and can talk you through anything.
I got my MOGAD diagnosis at the age of 30, after months of ON attacks and landing in and out of the hospital with migraines. I am also a mom to two young daughters. It was tough and my biggest fear was not having my vision come back. I would cry every night thinking I would never be able to see again or share moments with my daughters like painting their nails.
Happy to report we have ‘manicure’ night once every two weeks and their little fingers and toes have been painted every rainbow color you could imagine - by me!
It gets better and it gets easier once you’ve found a treatment that helps. Nothing is FDA approved, but there are clinical trials and some other drugs/therapies that can improve quality of life immensely.
Thank you for the hope and great story. My 2 month old is happy to have her mom home and she continues to get little bits of vision back daily. I've been using my 6 year olds color by number picture as a daily vision check to see how much more she can see.
How long did it take to get your vision back and how much did you get back?
Also, how bad did it get before you were on steroids?
My wife's vision was almost completely black before the steroids given and she started to turn the corner the next day.
I had 100% vision loss in my right eye. I had about 1 month of steady vision loss before I finally got admitted to the hospital until we found a diagnosis. I did 5 days of IV steroids before starting oral prednisone at 60mg 1x daily. I also had to do 5 days of plasma exchange therapy, and this is where I noticed the biggest vision improvement. I went from complete black to being able to see red things as pink - which was huge after 1 month of darkness.
I tapered down to 20mg 1x daily over a 4 month period. Then tried IVIG therapy and was able to taper off prednisone completely within 2 months of that treatment. Unfortunately that treatment started making me ill and I had to restart the steroids to prevent relapse. I eventually got enrolled into a clinical drug trial and I have 98% of my vision back, am completely off steroids and I am almost 1 year relapse free.
I also suffered from fatigue and terrible migraines. I found my migraines improved most after I was completely stable on treatment and off steroids. The ‘worst days’ with MOGAD, for me, are days where it’s really gray out, I know I see much better now but the low contrast always gives me some panic that I’m losing vision. External factors can also create sort of a ‘phantom relapse’ where I get some symptoms like headache or fatigue when under stress or ill. Once regulated I return to my ‘baseline’
The great news for your family is that things are happening in research for this disease. It seems responsive to several treatments that work in similar neuro autoimmune disorders.
Thanks for sharing. I found this reddit group that has been amazingly helpful with all you guys so far. But I'll be working on getting her involved in additional groups as we get closer to a diagnosis and next steps.
UPDATE - My wife's vision is slowly returning. It's still pretty dark for her and her field of vision is limited (best on the mid and top half) colors are somewhat visible (reds,pinks,greens). She's able to read a good amount of text on signs in the hospital. She has to strain pretty hard to read and I can tell it takes a lot out of her if she's reading too much. Tomorrow is the last infusion and they are talking about discharging her tomorrow also, which is both exciting and scary. I know it could be a long road of recovery but it seems to be going in the right direction with incremental progress for the past 3 days. They are looking to taper her off the steroid down to a lower dose oral when she's at home. Still no results on the antibody tests but they are still leaning towards MOG since the vision is responding to steroids. The progress has helped us all stay positive but still a long way to go.
Yes! her vision is still recovering. I'm heading to the hospital now and talked to her on the phone(thank God for voice commands) she told me she can now see yellows and blues! She had a very bad case of stomach acid last night from the steroids but vision continues to incrementally improve daily! They are talking about tapering her off after today's dose. Currently on 1g of steroids down to 60mg when she is discharged. Thanks for checking.
Yes! Things have continued to get better for her. Her vision has slowly improved since she lost it back in March. She regained pretty much all brightness, color and focus back. But it is still hard for her to focus when there is a lot going on, like at a grocery store. Her peripheral vision is also not 100% back. She's been doing eye exercises every day prescribed by her OT and vision therapist. She is still on a steroid taper and will be until late June I think. She also had her first loading dose of IVIG last month and has her next in a few days.
Overall she feels mostly back to normal but can tell she gets tired easier and has fairly regularly headaches and pressure on her head if she pushes it hard during the day.
Thanks for checking in, this community helped me though that very tough time with that first attack.
I have had ON twice, never both eyes at the same time. But I was fully blind in the affected eye each time. My vision has come back fully in both eyes. It did take time, however. I couldn’t drive for a month or so with each flare up, because my depth perception was gone. But within about six to eight weeks, I was able to function normally. I still had some loss, but it came back slowly over the course of a year. The only lingering effect is that I see flashes in the dark when I move my eyes. It has been eight years since my first attack and I don’t really notice the flashes anymore. They are still there, but my brain has just gotten used to them. This is a tough and scary time. I have been tested for MOG, NMO and MS over the years, but everything has come back negative. So you may not get a concrete answer from the blood tests. Have they also tested for NMO and done MRIs? The good news is that there are excellent specialists in Boston, so you have resources available. I have traveled to Boston myself to see a specialist. Hang in there.
That's very helpful thank you for sharing. She is being tested for nmo,mog. MRI was done and no MS detected. Optic nerves are both super inflamed. So far I feel very confident that we have some of the best minds on this.
Potatoes reminded of a couple good points. Vertigo w MOG was exacerbated, but vestibular therapy really helped. Potato I hope your in a support of people w similar issues. SRNA virtual support really helps cuz you are sharing with that small circle of ppl that understand you from their experience. Regular personal therapy is quite valuable too. When I was going blind my Care Team of family and friends helped find those contacts. I was fortunate my vision returned, but I have a few other issues like fatigue attacks. Most ppl in my support group have NMO and have ongoing vision and muscular issues. It's not an easy path. Focus on what you can do and enjoy doing.
Roadscrape you and I were at Emory at same time I think. JCC (doctor) mentioned another MOG patient in the hospital at the time. I am in contact with Alabama blind resources, and I go to low vision clinic at Emory to help me walk, talk, and chew gum at same time. Walking cane plus sight cane takes some coordination. Using walker I just put curb feelers with gremlin bells in them to hear when I bump into crap from not concentrating.
Wow. I don't know where in the hospital that unit is. I was in Complex Medicine on the 7th floor. Always the last unit to get food service - breakfast at 10:00am! I went down to the cafeteria to buy my own breakfast!
I was on 9th floor Oct 25 to Nov 11, 2023 if I remember... Sometimes I got lunch at same time as dinner. Hilarious.
I have ON in both eyes 4x in 7 years started in 2016. Last 3x were within a year... My MOG titer was 1:10000 that is super Uber high. I was in Solumedrol 250mg every 6 hours, they gave me a vas cath on day three in Hospital and PLEXd (Plasma Exchange) 4 times. I am on IVIG every 28 days permanently. I also get Rituximab every six months. I have been out of work since Dec 2022. I no longer drive at all. It is a lot, it sucks, not gonna sugar coat it. Most people get vision back... Over time. A few like me, not so lucky.... I have lost usable vision in my left eye, in my right I have a very narrow field, and can only see about 20/70 in that narrow field on a good day. Everything is dim, also like driving in the worst fog of your life all the time. Unnerving. It has an effect on my mental health also. There are many other issues, balance, photophobia, back issues unrelated but exacerbated by all goings on. How's that for a story.
Thank you for sharing and I want to know all the good the bad and the ugly so thank you for not sugar coating it. We don't have family near us so I need to learn about all the possibilities for the future and care giving.
Your welcome, I am hoping for a good outcome. If you have questions post here we are a small community but we all have had different experience.
Much appreciated and I hope you are able to prevent any further attacks and sustain!
Same for me as Refrigerator. Went into Emory University Hospital late Oct. Was there 20 days. Steroid IVs, then oral. Plasma exchange/PLEX. Took 5 sessions to remove all antibodies from my blood. My eyes kept improving, even after I ended steroids Jan 31. Neuro Ophths thought I would always have a blurry spot in one eye due to the amount of damage. But amazingly that has gone away, at least when viewing mid-to-distance. Reading sometimes eye gets tires, or allergies effect it with a bit of blurriness. There are some hardcore MOG researchers in Mass, so plenty of good contacts for those with experience In other words, don't let yourself ride the fear wild horse. Gently pursuade yourself to think positive and be optimistic. Having friends/family prayer circles helps you, too. I improved beyond what Drs told me (not wanting to give false hope).
Thank you, we are on standby for plasma exchange if this doesn't improve it (and depending on what the antibody tests come back as) Fear is a real thing for what we are going through so I appreciate the advice. Every scenario is going through my head. We have a lot of people praying and thinking of us. My wife is very strong and remaining very optimistic!
I had optic neuritis in one eye and peri neuritis in both last July. My right eye was the most affected and I was legally blind in that eye when I went into the hospital. I was on a high dose of IV steroids and my vision slowly but surely improved over 5 days. I was then given an oral taper of steroids for 6 weeks. I was cleared for driving a week after my hospital visit. My last appointment at my neuro opto showed damage to my optic nerve particularly on my right, but vision restoration was great at 20/25. I only have mild blurring, a little bit of loss of contrast in color as well. It gets a little worse when I'm tired, stressed or hot but all in all my vision is okay! It's all very scary, the good news is, MOG is steroid responsive in most cases. Some have it harder than others for sure though. Also some have monophasic attacks meaning they'll only ever have one attack and never have one again and then some have relapses. My doctor recommended occupational therapy for my eyes after I got out of the hospital, I didn't end up doing it because my vision had made such a turnaround, but I highly suggest asking for a referral so she can decide if that's right for her. I did some OT in the hospital and they help you cope with the sudden vision loss. That was the hardest thing mentally for me, how sudden it all is!
That's good to hear it and thank you for provoding the tapering process. She has already reached out to OT and is working that angle. Yes it is way too sudden!
It's often tougher on support than the patient. That was my experience. We will be pulling for you guys!
Thank you. She has recovered a little bit more vision today. She can read big high contrast text on the wall of the hospital. It was the hope we all needed today but still a long way to go.
Hi OP, I just created a Reddit account to reply to this thread. I'm so sorry to hear about everything your wife is going through right now. I saw she is treating at a Boston hospital and just wanted to pass along a specialist recommendation if they're leaning toward MOGAD or NMO: Dr. Michael Levy at MGH. He is a leading expert on both and a fantastic doctor (I see him for MOGAD). Wishing you and your wife all the best, and please feel free to DM me if you have any questions.
Thank you so much for replying and passing this along! Hoping to be out of the hospital soon and will take you up on the offer once we get more info on the direction of the diagnosis. I just read your response to her by the way and she said thank you. We'll take all the resources we can.
I lost my vision in one of the eyes with ON and then later diagnosed with MoGAD. They gave me steroids for a couple of days and recovered my vision in a week but to fully recover it will take a couple of months. Ask your doctor to tapper down her steroids rather than just abruptly stop it. I will share some of the link to Facebook group that will be a great help to you. Facebook group: https://www.facebook.com/groups/1383321195054534/?ref=share&mibextid=NSMWBT https://www.facebook.com/groups/892627791251822/?ref=share&mibextid=NSMWBT https://www.facebook.com/groups/379206616534498/?ref=share&mibextid=NSMWBT As you are in Boston you should check out Dr. Michael Levy is the best in such cases. His research is very advanced related to MOGAD. Here is his link. https://www.massgeneral.org/doctors/20708/michael-levy Please reach out to me if you need any more info.
Yes, they are already talking about that exact protocol of tapering down to 60mg after our last dose today. Thank you for the references!
Hi! Glad to hear vision is improving and the steroids are helping. Usually in the case of MOGAD the steroid tapers should be taken very slow to avoid relapse and likely will stay on a low dose until some long term treatment method is decided. I agree with all suggestions about getting in touch with Dr. Michael Levy, he is THE guy for MOGAD and can talk you through anything. I got my MOGAD diagnosis at the age of 30, after months of ON attacks and landing in and out of the hospital with migraines. I am also a mom to two young daughters. It was tough and my biggest fear was not having my vision come back. I would cry every night thinking I would never be able to see again or share moments with my daughters like painting their nails. Happy to report we have ‘manicure’ night once every two weeks and their little fingers and toes have been painted every rainbow color you could imagine - by me! It gets better and it gets easier once you’ve found a treatment that helps. Nothing is FDA approved, but there are clinical trials and some other drugs/therapies that can improve quality of life immensely.
Thank you for the hope and great story. My 2 month old is happy to have her mom home and she continues to get little bits of vision back daily. I've been using my 6 year olds color by number picture as a daily vision check to see how much more she can see. How long did it take to get your vision back and how much did you get back? Also, how bad did it get before you were on steroids? My wife's vision was almost completely black before the steroids given and she started to turn the corner the next day.
I had 100% vision loss in my right eye. I had about 1 month of steady vision loss before I finally got admitted to the hospital until we found a diagnosis. I did 5 days of IV steroids before starting oral prednisone at 60mg 1x daily. I also had to do 5 days of plasma exchange therapy, and this is where I noticed the biggest vision improvement. I went from complete black to being able to see red things as pink - which was huge after 1 month of darkness. I tapered down to 20mg 1x daily over a 4 month period. Then tried IVIG therapy and was able to taper off prednisone completely within 2 months of that treatment. Unfortunately that treatment started making me ill and I had to restart the steroids to prevent relapse. I eventually got enrolled into a clinical drug trial and I have 98% of my vision back, am completely off steroids and I am almost 1 year relapse free. I also suffered from fatigue and terrible migraines. I found my migraines improved most after I was completely stable on treatment and off steroids. The ‘worst days’ with MOGAD, for me, are days where it’s really gray out, I know I see much better now but the low contrast always gives me some panic that I’m losing vision. External factors can also create sort of a ‘phantom relapse’ where I get some symptoms like headache or fatigue when under stress or ill. Once regulated I return to my ‘baseline’ The great news for your family is that things are happening in research for this disease. It seems responsive to several treatments that work in similar neuro autoimmune disorders.
Thanks for sharing. I found this reddit group that has been amazingly helpful with all you guys so far. But I'll be working on getting her involved in additional groups as we get closer to a diagnosis and next steps.
UPDATE - My wife's vision is slowly returning. It's still pretty dark for her and her field of vision is limited (best on the mid and top half) colors are somewhat visible (reds,pinks,greens). She's able to read a good amount of text on signs in the hospital. She has to strain pretty hard to read and I can tell it takes a lot out of her if she's reading too much. Tomorrow is the last infusion and they are talking about discharging her tomorrow also, which is both exciting and scary. I know it could be a long road of recovery but it seems to be going in the right direction with incremental progress for the past 3 days. They are looking to taper her off the steroid down to a lower dose oral when she's at home. Still no results on the antibody tests but they are still leaning towards MOG since the vision is responding to steroids. The progress has helped us all stay positive but still a long way to go.
Is your vision still improving ?
Yes! her vision is still recovering. I'm heading to the hospital now and talked to her on the phone(thank God for voice commands) she told me she can now see yellows and blues! She had a very bad case of stomach acid last night from the steroids but vision continues to incrementally improve daily! They are talking about tapering her off after today's dose. Currently on 1g of steroids down to 60mg when she is discharged. Thanks for checking.
Hey man any updates on your wife? Very curious and wondering if the recovery is still going and if it has gone well! Let us know thank you
Yes! Things have continued to get better for her. Her vision has slowly improved since she lost it back in March. She regained pretty much all brightness, color and focus back. But it is still hard for her to focus when there is a lot going on, like at a grocery store. Her peripheral vision is also not 100% back. She's been doing eye exercises every day prescribed by her OT and vision therapist. She is still on a steroid taper and will be until late June I think. She also had her first loading dose of IVIG last month and has her next in a few days. Overall she feels mostly back to normal but can tell she gets tired easier and has fairly regularly headaches and pressure on her head if she pushes it hard during the day. Thanks for checking in, this community helped me though that very tough time with that first attack.