I was diagnosed with MS in March, 2013. Last October, I lost all vision in one eye. It has slowly come back. Not perfect by any stretch of the imagination but, far better than it was. In December, my right foot started going numb, beginning with the toes. That pretty rapidly continued up my leg until I was numb from hip all the way down. That too slowly started getting better but now, all these months later, my leg is still numb from calf down. On some days, it makes walking a real chore- it feels like I am dragging a lead stump.
So, I constantly wonder if it will continue to get better or if I'm stuck with it. I have been on Tecfidera since May. Any comments would be greatly appreciated as I am beyond frustrated.
Have you had any experience with the use of methylprednisolone? (also referred to as Solu-Medrol or ISVM. It's the 3-5 day IV course of steroids)
I know it isn't liked by some, but it does seem that your case would at least warrant it being offered to you.
You are on one of the newest approved treatments. Have you been happy with it? Have you been on or offered any others? Perhaps you could also look into something that might be a better fit (if it's determined your relapse rate might be more than 'expected'). We have a good few to try out these days (sorry, I'm pretty sure you already know this!).
Personally, I'd be getting in touch with my medical team quickly and (with their agreement) getting IVSM or at least some testing to have this relapse documented in your notes.
Hi and welcome - I'm sorry you joined this club of MSers. From what I gather, your doctor would have been aware of this numbness before your diagnosis and you don't mention is there was treatment like IVSM offered, The thing about relapses that is difficult is they will resolve on their own good old time and the use of megadoses of steroids is helpful to calm the inflammation but if we don't do the IVSM, it will still resolve on its own to whatever point that new normal might be.
Ok, I know that was entirely confusing and a horrible sentence. This does not sound like a new relapse to me but the continuation of symptoms from an old event.
Interestingly, my daughter had back surgery this summer for a herniated disc which caused numbness and pain in her right leg. I went to her post-surgery appt with her and the neurosurgeon said that regeneration of nerves and relief from the numbness is incredibly slow and heals at a rate of 1mm per day or something crazy like that. She is 6.2 tall and he told her it would take over a year for the healing to complete at her height. I wonder if the same correlates to MS nerve damage and remyelination?
I do know some people have problems a long time with the numbness before it goes away, and unfortunately for others it never completely clears up. Immesceo is so right that you should ask your neurologist about this continuing numbness and see if there is anything recommended that might give you relief.
Welcome again. I hope we see you around more - Laura
Like Laura said, sorry you are here but glad you found the forum. I've found people here to be very warm and helpful. I'm grateful for their many friendships.
How is Tecfidera working for you so far and have you had a follow up MRI since starting? I'm going to begin soon after using another drug first, so I'm curious to know how you feel about the medicine.
Lastly, I am too new to give you real advice about the numbness but I can relate to both scenarios. The numbness in on my left side comes and goes since a flare up in March. It is not overly bothersome (knock on wood) but I definitely hope you get relief soon.
Hope you have a god weekend and best wishes!
I had Solu-Medrol, x five days (IV) in October when my vision went on hiatus. Then again at the beginning of January for my leg. Both times, it did not appear to do anything at all in regards to 'making things better'. I absolutely hated it though. The metallic taste in my mouth, dry mouth, excessive (and that's an understatement) sweating etc. Not my cup of tea.
I have a neuro appointment at the end of this month. Last time I saw him, in July, he stated that I would have another round or MRI's in January. And yes, he is fully aware that the numbness has continued.
Tecfidera: I have not had any side effects whatsoever. I do take Zantac with it. No clue as to whether it is 'working' or not as I don't really have a history to compare it to. I function just fine (barring the three stupid little falls....). Only when I get tired can people tell that something is amiss- I sort of start dragging my right foot. I don't really see shoes with heels in my future but that's petty.
Thank you all for your replies!! I'll make it a point to check back here often!
Foot/leg numbness was my first symptom. In opposition to the norm, it effected both sides equally and worked its way up to the top of my shins.. If I were standing I had no awareness of my feet. I had pretty poor balance as a result. I felt like I was on a boat, so they actually gave me sea sickness medication :-)
At the time they were unable to determine the cause and eventually the feeling returned. As such, I did not pursue it. I have not experienced the numbness since, and it's been 20 years.
Just like other MS symptoms, there's no way to predict when/if numbness will subside. The longer it continues the less likely it is to remit fully or partially. My neuro said he's noticed that generally if a patient has had a continuing symptom for a year, it's unlikely, though not unheard of, that it will remit.
I've had a combination of numbness and pain in my left arm for > 5 years, from an early attack. It has never improved. Numbness in my feet, right hand, back, face, neck and trunk has mostly remitted though can be temporarily brought on by increased temperature. Aside from an initial course of IVSM, there really is no treatment for numbness. Although I've had luck with IVSM for other symptoms. It helped little to not at all for numbness. Any improvements I have had came with time, when they came at all.
One of the most frustrating things about numbness, aside from how difficult it is to treat, is how it can be dismissed as a benign, not troublesome symptom. People who haven't experienced it, at least on a chronic basis, tend to underestimate its impact on functioning. Not to mention the mental torture of never getting relief. I describe it as having Novocain shot in my hand 24/7. Some still seem to think it doesn't sound all that bad. Unless personally experienced, I don't think is possible to grasp its impact.
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