The only lingering symptoms months after my first major relapse were intermittent fatigue, intermittent emotional lability, and temperature intolerance, but every case is different. Ask your team about your prognosis for recovery of function.
I mean, yeah, but I don't think that's a symptom. It's more "I wasted so much time dealing with others' bullshit, got a.diagnosis that may limit the time I have left functioning well, I want to maximize what I get out of that time, however long it is, so others with bullshit can now eat a dick."
Took me a year to get my vision back in one eye.
Took me hmmm... A year or two to be able to tie knots again? I still lose that one sometimes.
Took me 10 years for my short term memory to come back, and it only did about 18 months after I started ocrevus. I feel like most of my symptoms have gone away except fatigue and brain fog. It's been a while since I had issues with heat. Used to shut me down real fast.
You don’t say what your treatment was in the hospital. When I was treated with a round of IV steroids, many years ago following relapsed, I regained about 95 percent of my function. But, even without relapses, function can decline continuously if you’re not being treated with a disease-modifying therapy.
Wow, 95%?
I am currently on Kesimpta, and that's keeping the activity down.
I was treated with high doses of solumedrol, both hospital stays. Didn't seem to manage the issues.
To be clear, it was 90-95% return to my pre-relapse...not pre-MS. And my pre-relapse level of disability was hardly noticeable. It seems as if your MS may have slowly progressed for a period of time before your exacerbation, so you had less ability to rebound. I hope you'll do better.
I’m 75 years old and have lived with an MS diagnosis for 43 of them. Two things about which I’m certain are that there IS life after MS and that life isn’t about hiding from the storm, it’s about learning to dance in the rain.
After my initial dx in 2012 the first round of steroids they gave me didn’t do anything. They gave a 2nd round and that did the trick. Was pretty much back to normal for 10 years.
Tysabri has been amazing for me. No disease progression, no side effects for me. I regained 90% of function. Only left with fatigue and some balance issues.
I didn’t get the use of my right arm or leg back. I just learned to live with my new normal
I was told it either comes back in the first 6-12 months or it probably never will
my first relapse I couldnt move my left leg. Afterwards, I haven't had any issues. it still tingles but it isn't "heavy" feeling and I can move it fine \*knocks on wood\*
For some people, that's the reality - I'm so sorry. I once lost my entire right arm/hand but it fully came back after a few months and it was gradually getting better all that while. I think my ability to recover is at its end though because I also have little vision in my right eye and weird sensations that have been around for ages. I will say that they're doing trials with clemastine/metformin to remyelinate nerves - that could potentially help you though obviously it's a trial so not guaranteed.
I’d say I’m about 90-95% have some fatigue and constant tingling in my toes and fingers. Also balance is a little off but overall not bad considering I couldn’t even walk for a few months.
Took me couple of years for the pain in my hands to get better. They were so sensitive it hurt to even touch my keyboard. Every year I had a relapse, always on my left side. I would be left with something each time. 18 years later my left arm is useless and my left leg barely works but I am so happy I have my right side,
My sight came back in full within a couple months when I had my first (and so far, only) relapse last year. I think the steroid I was given was solumedrol as well.
The crappiest thing about this disease, I think, is that it’s such a roll of the dice and affects everyone so differently. :( I wish I had something more constructive to say, but hang in there, OP!
I had horrific spasticity for months and then occasional severe spasticity for years after initial diagnosis. Took several years, but now it’s so minimal that I can even miss my usual morning baclofen and go through a day feeling just fine. It didn’t start getting drastically better until 3+ years after diagnosis, and it was so much better that I could start exercising regularly.
My first relapse was a brain stem lesion. It caused numbness, weakness, and some motor issues on the right side of my body. I could barely write for a while. The numbness was the symptom that stuck around the longest. It took about 1-1.5 years to achieve my new normal. I’d say I’m at 90% of where I was. When I’m stressed, overheating, or on my period I notice I start losing feeling in random places on the right side of my body, weakness is much more noticeable, and my hand will tremor.
I didn’t have any lasting symptoms. The event that got me diagnosed was diplopia caused by 7th nerve palsy (this is the nerve that controls the side to side movement of the eye). I was send to hospital and received a 3 day course of IV methylprednisolone. Was mostly back to baseline on day 2 and by day 4 was back to baseline with no lingering vision abnormalities.
I’m ridiculously lucky. My aunt who also has MS took a good 3 months for her vision to become normal again after one of her relapses and if she overheats it comes back slightly.
My first relapse I lost my affected my swallowing. I lost 20 pounds in a month. When it subsoded I could swallow some things again but most of the time meat like steaks/chops is still out of the question. Later, I lost most of the vision in my left eye from optic neuritis and I regained 85% of vision in that eye 6 months later.
I stopped having sporadic drop outs of motor function on my right side and burning flushes of pain on the left after a few weeks post steroids. I still feel kinda drunk in the boring way. The pain in my back etc has worsened but stabilised. The fatigue is Real.
MS healing takes far longer than anyone warned me. That's all I can offer. Definitely talk to your doctors and keep listening to others' experiences to get a better rounded idea. I wish you well!
Optic neuritis, went fully blind in one eye (full blanket of snow blindness) and severe pain, especially with eye movement.
I regained basically all my vision, colors are slightly less vibrant in my right eye but it's not easily noticeable anymore now. I still have constant and chronic eye pain (both eyes, especially right), pain due to exposure to light, my existing photophobia since childhood became worse, and pain when moving eyes. Sometimes the pain is bad, sometimes it's extreme, sometimes manageable, sometimes it's ok, sometimes it's hard to notice the pain.
TLDR - I regained all my vision. I'm just left with some chronic eye pain due to nerve damage (neuropathy).
I usually regain about 95-99% after a relapse. But if I get hot it all comes back, like a hot shower or bath. Then my vision is blurry, balance off, numbness everywhere.
If you have questions surrounding the diagnostic process, or have questions about suspected MS symptoms, please make a post in the stickied, weekly thread created for this purpose. However, please keep in mind that users here are not medical professionals, and their advice cannot replace that of a specialist. Please speak to your healthcare team.
Here are additional resources we have created that you may find useful:
Advice for getting a diagnosis: https://www.reddit.com/r/MultipleSclerosis/comments/bahq8d/think_you_have_ms/
Info on MS and its types/symptoms: https://www.reddit.com/r/MultipleSclerosis/comments/bahoer/info_on_ms/
Treatment options for MS: https://www.reddit.com/r/MultipleSclerosis/comments/bahnhn/treatment_options_for_ms/
If you have any questions, please let us know, and best of luck.
MS Mod Team
The only lingering symptoms months after my first major relapse were intermittent fatigue, intermittent emotional lability, and temperature intolerance, but every case is different. Ask your team about your prognosis for recovery of function.
How about intolerance for bullshit? I'm feeling that a lot these days...I wish I could have a doctor's note for that.
I mean, yeah, but I don't think that's a symptom. It's more "I wasted so much time dealing with others' bullshit, got a.diagnosis that may limit the time I have left functioning well, I want to maximize what I get out of that time, however long it is, so others with bullshit can now eat a dick."
Took me a year to get my vision back in one eye. Took me hmmm... A year or two to be able to tie knots again? I still lose that one sometimes. Took me 10 years for my short term memory to come back, and it only did about 18 months after I started ocrevus. I feel like most of my symptoms have gone away except fatigue and brain fog. It's been a while since I had issues with heat. Used to shut me down real fast.
Thanks for sharing. I appreciate your realism in a tough spot
Great to hear you recovered short term memory!
You don’t say what your treatment was in the hospital. When I was treated with a round of IV steroids, many years ago following relapsed, I regained about 95 percent of my function. But, even without relapses, function can decline continuously if you’re not being treated with a disease-modifying therapy.
Wow, 95%? I am currently on Kesimpta, and that's keeping the activity down. I was treated with high doses of solumedrol, both hospital stays. Didn't seem to manage the issues.
To be clear, it was 90-95% return to my pre-relapse...not pre-MS. And my pre-relapse level of disability was hardly noticeable. It seems as if your MS may have slowly progressed for a period of time before your exacerbation, so you had less ability to rebound. I hope you'll do better.
Ugh. Thanks for responding. I think I’m screwed. But with folks like you to help direct me, I might make it.
I’m 75 years old and have lived with an MS diagnosis for 43 of them. Two things about which I’m certain are that there IS life after MS and that life isn’t about hiding from the storm, it’s about learning to dance in the rain.
You are a magical being with a beautiful out look. I’ll work on it. Thank you so much.
I really needed this today, thank you!
After my initial dx in 2012 the first round of steroids they gave me didn’t do anything. They gave a 2nd round and that did the trick. Was pretty much back to normal for 10 years.
I gained back 95% too after a week of steroids in the hospital and starting a DMT.
What treatment did you decide on?
I decided on Tysabri.
How does it seem to be working for you?
Tysabri has been amazing for me. No disease progression, no side effects for me. I regained 90% of function. Only left with fatigue and some balance issues.
Is the JCV and Pml possibility worth it for you. I'm trying to decide if I want to start this DMT or start with Kesimpta.
They will kick you off Tysabri way before there is any chance of PML.
I didn’t get the use of my right arm or leg back. I just learned to live with my new normal I was told it either comes back in the first 6-12 months or it probably never will
Thanks for being open about it. I figured if I’m not walking yet, I probably won’t. Just a lot to get my head around it.
my first relapse I couldnt move my left leg. Afterwards, I haven't had any issues. it still tingles but it isn't "heavy" feeling and I can move it fine \*knocks on wood\*
For some people, that's the reality - I'm so sorry. I once lost my entire right arm/hand but it fully came back after a few months and it was gradually getting better all that while. I think my ability to recover is at its end though because I also have little vision in my right eye and weird sensations that have been around for ages. I will say that they're doing trials with clemastine/metformin to remyelinate nerves - that could potentially help you though obviously it's a trial so not guaranteed.
How far away from end abs us being able to actually take if successful ?
I’d say I’m about 90-95% have some fatigue and constant tingling in my toes and fingers. Also balance is a little off but overall not bad considering I couldn’t even walk for a few months.
Took me couple of years for the pain in my hands to get better. They were so sensitive it hurt to even touch my keyboard. Every year I had a relapse, always on my left side. I would be left with something each time. 18 years later my left arm is useless and my left leg barely works but I am so happy I have my right side,
My sight came back in full within a couple months when I had my first (and so far, only) relapse last year. I think the steroid I was given was solumedrol as well. The crappiest thing about this disease, I think, is that it’s such a roll of the dice and affects everyone so differently. :( I wish I had something more constructive to say, but hang in there, OP!
I had horrific spasticity for months and then occasional severe spasticity for years after initial diagnosis. Took several years, but now it’s so minimal that I can even miss my usual morning baclofen and go through a day feeling just fine. It didn’t start getting drastically better until 3+ years after diagnosis, and it was so much better that I could start exercising regularly.
Which treatment are you on?
Rituximab
My first relapse was a brain stem lesion. It caused numbness, weakness, and some motor issues on the right side of my body. I could barely write for a while. The numbness was the symptom that stuck around the longest. It took about 1-1.5 years to achieve my new normal. I’d say I’m at 90% of where I was. When I’m stressed, overheating, or on my period I notice I start losing feeling in random places on the right side of my body, weakness is much more noticeable, and my hand will tremor.
I didn’t have any lasting symptoms. The event that got me diagnosed was diplopia caused by 7th nerve palsy (this is the nerve that controls the side to side movement of the eye). I was send to hospital and received a 3 day course of IV methylprednisolone. Was mostly back to baseline on day 2 and by day 4 was back to baseline with no lingering vision abnormalities. I’m ridiculously lucky. My aunt who also has MS took a good 3 months for her vision to become normal again after one of her relapses and if she overheats it comes back slightly.
My first relapse I lost my affected my swallowing. I lost 20 pounds in a month. When it subsoded I could swallow some things again but most of the time meat like steaks/chops is still out of the question. Later, I lost most of the vision in my left eye from optic neuritis and I regained 85% of vision in that eye 6 months later.
I stopped having sporadic drop outs of motor function on my right side and burning flushes of pain on the left after a few weeks post steroids. I still feel kinda drunk in the boring way. The pain in my back etc has worsened but stabilised. The fatigue is Real. MS healing takes far longer than anyone warned me. That's all I can offer. Definitely talk to your doctors and keep listening to others' experiences to get a better rounded idea. I wish you well!
Optic neuritis, went fully blind in one eye (full blanket of snow blindness) and severe pain, especially with eye movement. I regained basically all my vision, colors are slightly less vibrant in my right eye but it's not easily noticeable anymore now. I still have constant and chronic eye pain (both eyes, especially right), pain due to exposure to light, my existing photophobia since childhood became worse, and pain when moving eyes. Sometimes the pain is bad, sometimes it's extreme, sometimes manageable, sometimes it's ok, sometimes it's hard to notice the pain. TLDR - I regained all my vision. I'm just left with some chronic eye pain due to nerve damage (neuropathy).
I usually regain about 95-99% after a relapse. But if I get hot it all comes back, like a hot shower or bath. Then my vision is blurry, balance off, numbness everywhere.
[удалено]
If you have questions surrounding the diagnostic process, or have questions about suspected MS symptoms, please make a post in the stickied, weekly thread created for this purpose. However, please keep in mind that users here are not medical professionals, and their advice cannot replace that of a specialist. Please speak to your healthcare team. Here are additional resources we have created that you may find useful: Advice for getting a diagnosis: https://www.reddit.com/r/MultipleSclerosis/comments/bahq8d/think_you_have_ms/ Info on MS and its types/symptoms: https://www.reddit.com/r/MultipleSclerosis/comments/bahoer/info_on_ms/ Treatment options for MS: https://www.reddit.com/r/MultipleSclerosis/comments/bahnhn/treatment_options_for_ms/ If you have any questions, please let us know, and best of luck. MS Mod Team
I have heard of people regaining. Dr. Terry Wahls has a pretty inspiring story.
Get that quack's name out of here
Thank you