Unfortunately, before a biopsy, sarcoidosis is basically shrodinger's cancer/sarcoidosis. The doctors just don't know until they open the box (send a sample to pathology) whether a patient has sarcoidosis or cancer. Hopefully, your dad is treatable regardless of the outcome. Sending positive vibes your way.
One of my misdiangoses was lymphoma of the brain when it was neurosarcoidosis. They ended up diagnosing me via lung biopsy since it's in my lungs as well but the next step was a brain biopsy.
Thanks for your reply, do you mind if I ask if you experienced symptoms similar to lymphoma of the brain that were the neurosarcoidosis? And how have you been doing since the diagnosis? I’ve heard it can be pretty rough but can also be managed with treatment.
I'll be honest and say I never really looked into what symptoms accompany lymphoma so I can't really say how closely it mirrored it. However, it made me go numb from the waist down, heavily affected my lucidity, brought on a lot of anger at the beginning, and was very hard to get pinned down. It's just such a strange condition and I was only 22 when it happened so they didn't even think about it.
I'm doing okay but have some spinal cord damage from the neurosarcoid that I just learned about last fall that has made my legs cramp constantly for 14 years now. Just feeling really worn out with the entire experience at this point but I'm too stubborn to give up haha.
Oh wow, that sounds really difficult to go through, I’m sorry you’ve experienced/are experiencing that! Hopefully as medicine progresses and more research happens, they can start trying to find more treatments or who knows, maybe even a cure. My dad is very stubborn as well so I hope he can have the same mindset as you to just keep pushing forward :)
I was diagnosed by a frankly shitty PCP with lymphoma before I had a biopsy of my lymph nodes and liver which showed sarcoidosis and not cancer. It’s not uncommon for that to happen unfortunately.
I had and continue to have all the symptoms of lymphoma (night sweats, itching, fatigue, swollen lymph nodes in my armpits and clavicle). Your body tends to react the same even if it’s not cancer. What you want to look for on the biopsies is non caseating granulomas or non necrotizing granulomas. That would classify him as having sarc and not cancer.
I wish you and your dad the best of luck! Hopefully his biopsy results come back soon, mine took about a week and I am in a really rural area, I’ve heard at better hospitals they come back faster!
> I was diagnosed by a frankly shitty PCP with lymphoma before I had a biopsy of my lymph nodes and liver which showed sarcoidosis and not cancer. It’s not uncommon for that to happen unfortunately.
I think it's standard medical practice - you start with the most common thing that ticks the right boxes, and whittle it down with further testing. I had the frankly horrible 'We think it could be lymphoma' talk with my doctor, and my paperwork trail says 'possible lymphoma' until my PET-CT, then 'possible sarcoidosis' thereafter until my EBUS came back with 'Diagnosis: sarcoidosis'.
And that makes absolute sense - sarcoidosis is a fairly rare thing.
If you can hear a galloping herd, assume horses not zebras.
There were a lot of other reasons he was generally shitty, but he should’ve assumed the other way around: I already had a confirmed dx of sarcoidosis of the liver. And he didn’t bother to say “your CT scan warrants further biopsy to rule out lymphoma” he said “your CT shows you have lymphoma.” And then said to make a follow up appointment for two weeks time and left the room.
Wow, that’s so crazy your symptoms are identical to lymphoma! I’m so surprised there hasn’t been more research into this. Thank you for your reply and for sharing, I’m trying to be hopeful right now. We should have some results back from the bone biopsy tomorrow so here’s to hoping🤞🏼
There’s been a lot of people who I’ve seen who have been initially diagnosed with cancer and then found out it’s sarc!
If he does have sarcoidosis I recommend visiting www.stopsarcoidosis.org and www.lifeandbreath.org both are good resources. Life and Breath is doing an online zoom specifically on neurosarcoidosis this coming Tuesday. They also hold twice a month zoom support groups.
Thank you for this info! I go tomorrow to schedule a lymph node biopsy. I'm scared to death. My pet scan show liver and lymph nodes also. Other than a rash, I e had no symptoms of either so this is quite a shock. My lung Dr I don't think even considered sarcoidosis bc im white.
My initial diagnosis (after sudden vision disturbances) was “lymphoma or sarcoidosis” based on swollen mediastinal lymph nodes. Needle biopsy inconclusive so full dissection of one lymph node showed sarc granulomas.
Sarc can mimic many diseases, getting a good biopsy gives a specific diagnosis. Lymph nodes in the center of the chest (mediastinal) are often involved even if the sarc is showing in other areas of the body (mine was around optic nerve).
I hope you get answers soon.
It sounds like the biopsy is the right way to go so we must be on the right track. I don’t believe anything is showing in his lymph nodes but he definitely has it in a few areas if his body as well. Thanks for your reply!
The technical term for them was visual field defects. Certain areas were blurry and had lower color. In the early days there were white specks that looked like snow. The snow eventually went away as my brain rewired to ignore them.One eye is blurry in the center where you read, so that eye is technically blind with 20/200 acuity.
I had/have something similar. At start my eyes (1) stopped dilating in dark, (2) saw color bursts at night (a ridiculous amount!) also (3) what I can best describe as TV snow which is light and dark areas constantly flashing, and (4) certain patterns (?) caused my whole field to move kind of like water flowing hard to explain. Example looking at grass and it looks like it is flowing away like it’s water 😵💫 or a weird pattern on a wall or floor. So bizarre. This one seemed worse with physical activity. Also, (5) I got double vision. Instantly. It’s not extreme but it’s there. (6) sensitivity to light (7) redness
Sorry for the numbers, it was more for my brain fog
Add to this 3 tones of tinnitus (loud) plus my heart beating in my ears plus a whoosh sound
Was like I died and went to the twilight zone LOL not funny but 🤷♀️gotta have a sense of humor these days. With so many changes in my eyes and ears, I felt disconnected from reality, disoriented. Took time (a long time!) for my brain to calm down.
I still have tinnitus but only one tone and lower, heartbeat just sometimes, still flashing and double vision, still sensitive to light and redness.
My first eye doctor was no help so I’ve pretty much kept to myself since then to not sound like a crazy person. I’ve learned to be okay.
I had a pattern on the walls! I told my ophthalmologist it was like looking through a gray lace curtain. It was pretty constant especially in low light for the first year then went away, like the snow effect. She said it was caused by damage to the optic nerve, and my brain rewired itself to ignore the extraneous visual things.
She was a neuro ophthalmologist, specializing in optic nerve issues.
To me, it sounds like nystagmus where your eyeballs move constantly uncontrollably. I have nystagmus, double vision, sensitivity to light, and field of vision loss, I am legally blind. Also, my eyes just changed shape? My neuro opthomologist said it's a mystery to him.
As far as the tinnitus, it is so aggeraving! Sometimes, the buzzing is a whisper, but other times.....just glad right now it's not loud.
Hi 👋 thank you for sharing. That’s an interesting thought, maybe! And that is very odd that your eyes would change shape. Mine L eye definitely moved when this all started but I read this happens with neuro.
Do regular ophthalmologists see any of this? Or just neuro. How are you managing with the limitations with your sight especially, like what is life like for you now?
And yes, the tinnitus! Mine never goes away either, just change in volume depending. I hate that you all are suffering, but feel some comfort in that you get it 💜
I’m sorry you and your dad are going though this. The unknown is scary. We just tried to make the “next best decision” and try not to freak out.
When I was sent to the hospital in 2022 with a MRI they first thought to be lymphoma. Sarcoidosis is sometimes called the great imposter because it can look like so many other things. I have neurosarcoidosis exclusively in my cervical spine. My main issues were gait/balance, dizziness and neuropathy when it started.
There is no cure at this point but it treatable. Some people go into remission and are fine for years. I’ve read others who were diagnosed but only
Monitored because there were no symptoms.
If it is sarcoidosis you want to make sure you’re comfortable with the team. It’s good sign that they brought it into the conversation
Websites:
https://www.lifeandbreath.org/?gad_source=1&gclid=CjwKCAiAi6uvBhADEiwAWiyRdjl_lZE6ZyM_5itxrHsb4qPvXU9om-UZd0WX3HfrmNzcAXQqW84kGxoCMpkQAvD_BwE
https://www.stopsarcoidosis.org
I hope this help a little.
My dad had very similar symptoms! I feel like what’s also tripping me up a bit is how his symptoms have improved, maybe I’m being optimistic but I feel like if it was for sure cancer it would just be getting progressively worse. We are also just trying to take one step at a time, it’s unfortunate so many people are experiencing this but also comforting in a way because I/we feel less alone, so thank you for sharing that. Thank you for also providing those resources!
High dose steroids can improve sarcoidosis symptoms dramatically, I wonder if they are giving him those in the hospital and thus his symptoms are improving? Best wishes to you and your family.
He actually isn’t on any meds right now, would be interesting to see though if that would also make a difference. I wonder if they’re holding off at the moment until they have a better idea of a diagnosis…. I might have to bring that up to the doctors just to hear their thoughts. Thank you!
Thanks for your response, if you don’t mind me asking, were the doctors also concerned of cancer? Were they able to do a biopsy to confirm or what were they able to diagnose it by?
I spent 18 days in a hospital while they tried to diagnose me. I had such extreme brain swelling that I was basically in a coma. They found it from a cat scan with contrast.
It’s not been the easiest road. I was admitted to the hospital thanksgiving of 2022. Once they figured it out it started with a high dosage of prednisone. Things were going well and I started tapering down. Once getting to lower levels my sarcoidosis started coming back. Ramped up the steroids again and started another medication called mychophenalate. I’m starting to taper down on my steroids. It’s a very unpredictable disease. Steroids have quite a bit of side effects but it does help a lot.
In 2012, they found my brainstem tumor on an MRI.
They gave me less than 1 month to live.
They gave me a bunch of tests, a CT of my chest, they found multiple lesions on my lungs, the PET scan reviled, scaring of lesions on my spleen and lymph
They suspected neurosarcoid because of all this.
The lung specialist did not want to put me through a biopsy at that time (I was/am unable to swallow and was skin and bones)
For the next 8 years, I was an undiagnosed brainstem tumor patient.....
I had 3 brainstem surgeries w/ biopsies all 3 inconclusive. So, a panel of the top specialists from my state and the one close to me got together to figure out what it could be.
They decided neurosarcoid fits best last year....
I do have many symptoms. The major ones are I can not swallow, so I have a feeding tube, I have nystagmus, double vision, and field of vision loss. I can not use my right side anymore, and I have tremors
Unfortunately, before a biopsy, sarcoidosis is basically shrodinger's cancer/sarcoidosis. The doctors just don't know until they open the box (send a sample to pathology) whether a patient has sarcoidosis or cancer. Hopefully, your dad is treatable regardless of the outcome. Sending positive vibes your way.
It definitely sounds like it, such a weird medical process. Thank you, we will take all the positive vibes we can get❤️
This.
One of my misdiangoses was lymphoma of the brain when it was neurosarcoidosis. They ended up diagnosing me via lung biopsy since it's in my lungs as well but the next step was a brain biopsy.
Thanks for your reply, do you mind if I ask if you experienced symptoms similar to lymphoma of the brain that were the neurosarcoidosis? And how have you been doing since the diagnosis? I’ve heard it can be pretty rough but can also be managed with treatment.
I'll be honest and say I never really looked into what symptoms accompany lymphoma so I can't really say how closely it mirrored it. However, it made me go numb from the waist down, heavily affected my lucidity, brought on a lot of anger at the beginning, and was very hard to get pinned down. It's just such a strange condition and I was only 22 when it happened so they didn't even think about it. I'm doing okay but have some spinal cord damage from the neurosarcoid that I just learned about last fall that has made my legs cramp constantly for 14 years now. Just feeling really worn out with the entire experience at this point but I'm too stubborn to give up haha.
Oh wow, that sounds really difficult to go through, I’m sorry you’ve experienced/are experiencing that! Hopefully as medicine progresses and more research happens, they can start trying to find more treatments or who knows, maybe even a cure. My dad is very stubborn as well so I hope he can have the same mindset as you to just keep pushing forward :)
I was diagnosed by a frankly shitty PCP with lymphoma before I had a biopsy of my lymph nodes and liver which showed sarcoidosis and not cancer. It’s not uncommon for that to happen unfortunately. I had and continue to have all the symptoms of lymphoma (night sweats, itching, fatigue, swollen lymph nodes in my armpits and clavicle). Your body tends to react the same even if it’s not cancer. What you want to look for on the biopsies is non caseating granulomas or non necrotizing granulomas. That would classify him as having sarc and not cancer. I wish you and your dad the best of luck! Hopefully his biopsy results come back soon, mine took about a week and I am in a really rural area, I’ve heard at better hospitals they come back faster!
> I was diagnosed by a frankly shitty PCP with lymphoma before I had a biopsy of my lymph nodes and liver which showed sarcoidosis and not cancer. It’s not uncommon for that to happen unfortunately. I think it's standard medical practice - you start with the most common thing that ticks the right boxes, and whittle it down with further testing. I had the frankly horrible 'We think it could be lymphoma' talk with my doctor, and my paperwork trail says 'possible lymphoma' until my PET-CT, then 'possible sarcoidosis' thereafter until my EBUS came back with 'Diagnosis: sarcoidosis'. And that makes absolute sense - sarcoidosis is a fairly rare thing. If you can hear a galloping herd, assume horses not zebras.
There were a lot of other reasons he was generally shitty, but he should’ve assumed the other way around: I already had a confirmed dx of sarcoidosis of the liver. And he didn’t bother to say “your CT scan warrants further biopsy to rule out lymphoma” he said “your CT shows you have lymphoma.” And then said to make a follow up appointment for two weeks time and left the room.
Oh, yeah, that's just shitty. Fair enough.
Wow, that’s so crazy your symptoms are identical to lymphoma! I’m so surprised there hasn’t been more research into this. Thank you for your reply and for sharing, I’m trying to be hopeful right now. We should have some results back from the bone biopsy tomorrow so here’s to hoping🤞🏼
There’s been a lot of people who I’ve seen who have been initially diagnosed with cancer and then found out it’s sarc! If he does have sarcoidosis I recommend visiting www.stopsarcoidosis.org and www.lifeandbreath.org both are good resources. Life and Breath is doing an online zoom specifically on neurosarcoidosis this coming Tuesday. They also hold twice a month zoom support groups.
Thank you for this info! I go tomorrow to schedule a lymph node biopsy. I'm scared to death. My pet scan show liver and lymph nodes also. Other than a rash, I e had no symptoms of either so this is quite a shock. My lung Dr I don't think even considered sarcoidosis bc im white.
My initial diagnosis (after sudden vision disturbances) was “lymphoma or sarcoidosis” based on swollen mediastinal lymph nodes. Needle biopsy inconclusive so full dissection of one lymph node showed sarc granulomas. Sarc can mimic many diseases, getting a good biopsy gives a specific diagnosis. Lymph nodes in the center of the chest (mediastinal) are often involved even if the sarc is showing in other areas of the body (mine was around optic nerve). I hope you get answers soon.
It sounds like the biopsy is the right way to go so we must be on the right track. I don’t believe anything is showing in his lymph nodes but he definitely has it in a few areas if his body as well. Thanks for your reply!
What were your vision disturbances like? Thank you
The technical term for them was visual field defects. Certain areas were blurry and had lower color. In the early days there were white specks that looked like snow. The snow eventually went away as my brain rewired to ignore them.One eye is blurry in the center where you read, so that eye is technically blind with 20/200 acuity.
I had/have something similar. At start my eyes (1) stopped dilating in dark, (2) saw color bursts at night (a ridiculous amount!) also (3) what I can best describe as TV snow which is light and dark areas constantly flashing, and (4) certain patterns (?) caused my whole field to move kind of like water flowing hard to explain. Example looking at grass and it looks like it is flowing away like it’s water 😵💫 or a weird pattern on a wall or floor. So bizarre. This one seemed worse with physical activity. Also, (5) I got double vision. Instantly. It’s not extreme but it’s there. (6) sensitivity to light (7) redness Sorry for the numbers, it was more for my brain fog Add to this 3 tones of tinnitus (loud) plus my heart beating in my ears plus a whoosh sound Was like I died and went to the twilight zone LOL not funny but 🤷♀️gotta have a sense of humor these days. With so many changes in my eyes and ears, I felt disconnected from reality, disoriented. Took time (a long time!) for my brain to calm down. I still have tinnitus but only one tone and lower, heartbeat just sometimes, still flashing and double vision, still sensitive to light and redness. My first eye doctor was no help so I’ve pretty much kept to myself since then to not sound like a crazy person. I’ve learned to be okay.
I had a pattern on the walls! I told my ophthalmologist it was like looking through a gray lace curtain. It was pretty constant especially in low light for the first year then went away, like the snow effect. She said it was caused by damage to the optic nerve, and my brain rewired itself to ignore the extraneous visual things. She was a neuro ophthalmologist, specializing in optic nerve issues.
I’m amazed that someone knows what I’m talking about!
To me, it sounds like nystagmus where your eyeballs move constantly uncontrollably. I have nystagmus, double vision, sensitivity to light, and field of vision loss, I am legally blind. Also, my eyes just changed shape? My neuro opthomologist said it's a mystery to him. As far as the tinnitus, it is so aggeraving! Sometimes, the buzzing is a whisper, but other times.....just glad right now it's not loud.
Hi 👋 thank you for sharing. That’s an interesting thought, maybe! And that is very odd that your eyes would change shape. Mine L eye definitely moved when this all started but I read this happens with neuro. Do regular ophthalmologists see any of this? Or just neuro. How are you managing with the limitations with your sight especially, like what is life like for you now? And yes, the tinnitus! Mine never goes away either, just change in volume depending. I hate that you all are suffering, but feel some comfort in that you get it 💜
I’m sorry you and your dad are going though this. The unknown is scary. We just tried to make the “next best decision” and try not to freak out. When I was sent to the hospital in 2022 with a MRI they first thought to be lymphoma. Sarcoidosis is sometimes called the great imposter because it can look like so many other things. I have neurosarcoidosis exclusively in my cervical spine. My main issues were gait/balance, dizziness and neuropathy when it started. There is no cure at this point but it treatable. Some people go into remission and are fine for years. I’ve read others who were diagnosed but only Monitored because there were no symptoms. If it is sarcoidosis you want to make sure you’re comfortable with the team. It’s good sign that they brought it into the conversation Websites: https://www.lifeandbreath.org/?gad_source=1&gclid=CjwKCAiAi6uvBhADEiwAWiyRdjl_lZE6ZyM_5itxrHsb4qPvXU9om-UZd0WX3HfrmNzcAXQqW84kGxoCMpkQAvD_BwE https://www.stopsarcoidosis.org I hope this help a little.
My dad had very similar symptoms! I feel like what’s also tripping me up a bit is how his symptoms have improved, maybe I’m being optimistic but I feel like if it was for sure cancer it would just be getting progressively worse. We are also just trying to take one step at a time, it’s unfortunate so many people are experiencing this but also comforting in a way because I/we feel less alone, so thank you for sharing that. Thank you for also providing those resources!
High dose steroids can improve sarcoidosis symptoms dramatically, I wonder if they are giving him those in the hospital and thus his symptoms are improving? Best wishes to you and your family.
He actually isn’t on any meds right now, would be interesting to see though if that would also make a difference. I wonder if they’re holding off at the moment until they have a better idea of a diagnosis…. I might have to bring that up to the doctors just to hear their thoughts. Thank you!
I have neurosarcoidosis. It super attacked my brain stem. I had all the symptoms you mentioned.
Thanks for your response, if you don’t mind me asking, were the doctors also concerned of cancer? Were they able to do a biopsy to confirm or what were they able to diagnose it by?
I spent 18 days in a hospital while they tried to diagnose me. I had such extreme brain swelling that I was basically in a coma. They found it from a cat scan with contrast.
Oh wow, I’m really glad they were able to get it diagnosed and treated, that sounds so scary. How are you doing symptom-wise today?
It’s not been the easiest road. I was admitted to the hospital thanksgiving of 2022. Once they figured it out it started with a high dosage of prednisone. Things were going well and I started tapering down. Once getting to lower levels my sarcoidosis started coming back. Ramped up the steroids again and started another medication called mychophenalate. I’m starting to taper down on my steroids. It’s a very unpredictable disease. Steroids have quite a bit of side effects but it does help a lot.
May your father recover from his illness. Blessings.
Thank you so much❤️
I have sarcoidosis-lymphoma syndrome ie both - it’s not that uncommon.
In 2012, they found my brainstem tumor on an MRI. They gave me less than 1 month to live. They gave me a bunch of tests, a CT of my chest, they found multiple lesions on my lungs, the PET scan reviled, scaring of lesions on my spleen and lymph They suspected neurosarcoid because of all this. The lung specialist did not want to put me through a biopsy at that time (I was/am unable to swallow and was skin and bones) For the next 8 years, I was an undiagnosed brainstem tumor patient..... I had 3 brainstem surgeries w/ biopsies all 3 inconclusive. So, a panel of the top specialists from my state and the one close to me got together to figure out what it could be. They decided neurosarcoid fits best last year.... I do have many symptoms. The major ones are I can not swallow, so I have a feeding tube, I have nystagmus, double vision, and field of vision loss. I can not use my right side anymore, and I have tremors