hi im now 8 weeks into relapse was numb from feet to waist now have patches of numbness from feet to waist mainly now around waist this is the longest relapse i have had and am now becoming increasingly flustrated as to is this ever going to go away ,i play golf and am really fed up with this now as it is spoiling my everyday life , also it feels like my legs are burning somedays the symptoms are worse than others , anybody else had this and how long were your relapses and did you fully recover i am scared the longer it goes on the less chance of recovery, i was diagnosed in 1997 and this is
now only my third major relapse my last one i was numb from neck downwards and this was 12 years ago so i suppose i have been lucky it has taken 12 years for this to happen again
Hi It’s a damn nusiance isn’t it, i had a major relapse 14yrs ago num from chest dow which lasted 18 weeks and my legs have never fully recovered from it feel heavy and numb all the time and worse when they are cold. I’m going through another relapse at the moment 6th Nov it started feels like I’ve got really tight bands round my ankles & feet and my heels feel like they are vibrating!! This disease as been terrible to me over the last 3 yrs feel like I’ve never had a break from relapses. Do you take any medications? Might be worth asking if you could have IV steroids, not a cure but can help the recovery of the relapse. Hope you get back on the golf course soon, is it the golf your missing or the 19th hole? Lol xx
It’s still early days yet! I’m told the average duration of a relapse is 5-6 weeks, but I was amazed by this, as although I haven’t had very many, the ones I do have seem to burble on forever! What I call my bad one - the one that led to diagnosis - was similar to yours. That took me about a year to get over. But not a year to improve at all. Like you, I first started noticing that areas that had been completely numb were receding into patches - leaving restored sensation in between. Over time, the numb areas shrank further, until I was left with - and this sounds funny - a numb disk about the size of a two pence piece, on the inside of each foot!
Eventually, even these coin-sized areas disappeared, although I can’t pinpoint exactly when, as I’d sort of given up noticing, by the time they were that small. As well as the numbness, I was weak, and had reduced walking range for quite a long while too, although I never actually fell over, or was physically unable to walk - except for mere seconds sometimes - usually after sudden exertion. I had to practice very hard to get my walking range back, but can now walk up to four miles, on a good day - which I don’t think I was in the habit of before I got ill!
So don’t give up. I know it’s frustrating, but eight weeks is still not a long relapse. And it IS showing signs of improvement, so there’s every reason to be optimistic this will continue.
My worst relapse was almost 4 years ago now, I was also numb from waist to toes and my left arm/hand was also weak and numb. Steroids got me walking again but only very short distances and very slowly. From then on it was a very slow recovery. I had a month off work and still think I went back too soon which probably delayed recovery still more. It must have been about 4 months before I could walk a reasonable distance without needing an immediate nap to recover. Even now my walking is slow and my feet go numb very quickly as soon as I exert myself or am slightly tired. The feeling comes back when I stop and rest for a while. My thighs still burn when they are overtired. Like you, I thought at the time that the relapse would never stop and I would be left with cr@ppy legs forever but they did recover eventually. My left hand is constantly numb but I’ve learnt to live with it.
Rest is the key, take your time and things will improve, your body just needs time to repair itself. I have learnt to embrace afternoon naps like a little old lady!
xx