I will be starting 2 years of infusions every 4 weeks of natalizumab. My main concern is feeling better, i had a relapse in september and was numb from the waist down after 5 days of steroid iv the feeling came back but my hands are partially numb and the rest pins and needles. I suffer badly with fatigue and pain from walking.
Im wondering if anyone knows if the treatment might improve the symptoms i already have or will it only prevent further relapses? Appreciate any advice or thoughts on this!
My thoughts are that basically I don’t know but recovery after a relapse can take months . Do you feel that things are recovering even if only little by little and very slowly?
The brain, particularly younger brains, will find new neural pathways when old ones are damaged/ disrupted so, thinking out aloud then :
I know nothing about natalizumab but I guess that if nothing else, preventing relapses will give your brain more time to recover and build new pathways .
I’ve been on it 15 years. In my experience it really damps down disease activity and has given the chance to strengthen the bits of me that do still work. This has improved my quality of life and capabilities no end, even though the underlying damage still is what it is. No relapses for 15 years for me. It had been a real blessing. I hope that you find the same.
Thanks Hank, they are its just strange that everything is almost normal apart from my hands. I am new to this as was only diagnosed on Monday but basically knew it was MS when i had the relapse as was in a&e and they told me without telling me lol.
I havent asked them but im writing questions down so i can remember to ask on Tuesday.
Thanks JP! Ill ask my nurses on Tuesday about a diet plan and physio! Ive been catrying on as normal and making a point of using my hands more and just moving them to try and encourage normality! Alll the best to you!
In my experience, some relapses take a good while to get as much better as they are going to. I understand that some people find that their relapses heal completely, particularly in the early stages, although I have to say that they have never done that for me. But they have always got a lot better than when at their worst if that makes sense.
Yep I agree although MS disability is still gradual, sad but true, for instance I’m a lot more slurred (dysarthria) and unbalanced (ataxia) nowadays than I was in the early years.
Story of my first 10 years of MS in a graph! And that’s exactly why I think it’s so darned important to ward off those relapses if you possibly can with an effective DMD or anything else you can think of. The graph of my recent 15 stable years on Tysabri would be much prettier.
15 years that’s amazing, these are the stories I need to read ,
I was diagnosed beginning of month numb feet 24hrs later numb from knees down , this repeated next few days until numb from chest down , now right hand is still tingling , Everywhere has improved 95%
This weekend right leg has felt a bit weird/cold and have tingling also in my back , also yesterday my right hand was tingling more than normal,
Bit like how it was couple of weeks ago , can anyone tell me does this happen or is it new activity? Don’t want to bother ms nurse tomorrow if it’s common among ms suffers , also have had l’hermittes for past week but nurse said that was expected with where one my lesions were found and should settle but feels like it’s got worse over weekend , guess I’m asking should I ring ms team or wait it out ?
Thanks for any info
I do not know. From my own experience, which is all I have to go on, relapse recovery isn’t always straightforward and day to day can be affected by things like core temperature, stress, fatigue etc. Also, in the early days there can just be quite a lot of disease activity going on if one’s MS is particularly lively, which it is for some of us.
Thanks Alison
Yes that’s what I’m thinking it could all just be the same relapse and I might be worrying over nothing , I’m so new to all this,
yourself and others on here have be a big help
I’ll see how things are tomorrow as I don’t want to be bothering the ms team when I can bother you lot instead
Thanks again
And that’s exactly why I think it’s so darned important to ward off those relapses if you possibly can with an effective DMD or anything else you can think of. The graph of my recent 15 stable years on Tysabri would be much prettier.