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Relapse recoveries questions

HI all,

Ive lost all feeling in my legs, making things very difficult, and wondered if anyone else has had this, and also did feeling just come back or was it a gradual thing? Im also still thinking on the steriod front, in your experience, do you feel better after taking the steroids or is it still a waiting game??

Can you tell Im still really new to this, trying hard not to panic :?

Thanks everyone x

Hi,

I hate to say it, but I’ve got a feeling this is going to be another of those “it’s different for everyone” questions, so common with MS.

For me, the feeling took a long time (a year, maybe?) to come back completely - I was even beginning to think it never would. But I think I could tell it was improving quite quickly - within days.

I remember being delighted I could tell the carpet was wet (Don’t ask why the carpet was wet :wink: ), because I hadn’t been able to feel that a few days earlier.

I would say, in general, the biggest improvement was quite early. After that, it slowed a lot, but I still got subtle improvement, even months later.

I’ve never tried steroids, so can’t advise you about that. I was a bit depressed about the numbness, but with me it wasn’t really painful or disabling, so I never pushed for them. Maybe I should have, but it doesn’t make any difference to how well you recover - only how fast.

Tina
x

Hi Tina,

Thanks very much for your reply.

Im learning thats the difficult thing with ms, its different for everyine and there doesnt seem to be a straight forward answer.

Im 50/50 on the steroids at the moment, I dont like the idea of taking them, but my legs have also gone very weak and walking even with crutches has become v difficult, its like my legs just arent listening to my body, also my feet are v sensitive which is weird :?
Very Frustrating, trying to keep a positive head though…

Thanks again x

Hiya,
I’ve been on the steroids a few times, and now refuse to take them. Again, everybody has a different experience, but mine has never been good - the steroids taste disgusting, and I could still taste them a week after the course finished, also I felt like I’d had the biggest kicking of my life, and couldn’t sleep. Having said that, the time I took them for a problem with my walking, they did seem to help - they didn’t seem to do anything when I took them for a couple of bouts of optic neuritis. Try them, they might work, and you’ll know for next time what your reaction is going to be.

MS is a really difficult thing to explain, let alone get your own head around - don’t feel bad about asking questions, there’s quite a lot of knowledge and experience on these boards, and if we all share, then maybe we can shrink the problem a little.

Have you thought about hyperbaric oxygen? I’ve found that helps me - goes back to the mantra, everybody’s different, but it’s worth a bash.

Luisa
x

Hi Luisa,

Thanks for your reply, I guess I wont know if they help till I take them, just think the word steroid puts me off :wink:

Call me silly, but whats hyperbaric oxygen?

Thanks agaiin x

I have a friend who was once completely numb and unable to walk for months. She can now walk for miles. She still has times when the numbness reappears, but it’s never for long.

I hate steroids. They don’t do anything for me and the last batch completely screwed up my digestive system and how I treat my back conditions (I can’t take anti-inflammatories now) BUT I know loads of MSers who swear by them. The official thing on steroids is that they speed up the time to remission. They don’t change the outcome and they work best if taken early in a relapse. They stay in your system for weeks, so not having an immediate improvement is not the end of the world - it may still happen.

Hyperbaric Oxygen (AKA HBOT; hyperbaric oxygen treatment) is offered by the MS Therapy Centres (google to see if there is one near you). Basically it involves sitting in a chamber and being given oxygen under high pressure conditions. There is absolutely no scientific evidence that it helps MS, but some people find that it helps with some of their symptoms, especially bladder problems. The Therapy Centres ask for “donations” (they are a charity) which typically amount to about £10 a session. They recommend an intensive course to begin and then regular weekly “dives”. There is a lot of hype about some of these alternative treatments, so please don’t believe all you read. However, if you don’t have alternative treatments and/or you can afford it, then why not! Nothing ventured, nothing gained :slight_smile:

Karen x

Hi

I alwys take a course of steroids for a relapse because I’m impatient to get better and get back to as near normal as possible.

Often the improvement doesn’t start straight away but they stay workiing for about three months so there is still improvement to be had. The side effects are vile but for me it’s worth it.

And even when the relapse is over I’m left with background symptoms that are always there and which flare up from time to time so that makes it hard to answer your question because symptoms aren’t always the same. Improvement in numbness can change from hour to hour!