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Anyone with multiple sclerosis, can you answer this?

(7 Posts)
AStickInTime Sat 27-May-17 10:51:06

I've had a pseudo-relapse for nearly 2 months now, and appear to be able to walk reasonably ok around the house. However, the minute I try to go out, it becomes painfully obvious that I am slow and unsteady. It makes it hard to cross a road because I can't do it fast enough. So I need to temporarily use a stick, which only helps a little, but even 5-10% is better than nothing.

I just wondered how long people in this situation have taken to get back to seeing any improvement with strength/mobility, or indeed a complete recovery to 'normal' after the pseudo-relapse.

I'm being impatient aren't?!

RueDeWakening Sat 27-May-17 10:55:46

I had a relapse in November, and it's only in the last week or two that I've felt "normal" for want of a better word. My balance is still shocking though, and I can't walk in a straight line!

It sucks, you have my sympathy.

AStickInTime Sat 27-May-17 13:26:29

Oh that sounds like my first ever episode. Was it new lesions or old ones back in November? It took me about 9 months of physio to walk properly after my first event. It was really quite extreme. Gosh, am hoping this one isn't as bad as it's really cramping my style!

RueDeWakening Sat 27-May-17 13:35:32

MRI indicates new ones sad hoping tecfidera will help...

AStickInTime Sat 27-May-17 13:57:22

I know I was told that if I hadn't improved after a year then that would be it.

4 years later I improved a bit more, so it's not strictly true. I was also told not to use a stick so my brain would learn to rewired with more independence.

It's still not clear to me whether this pseudo-relapse means I should use a stick temporarily or not. No one is prepared to give me a black or white answer, so it seems to be a case of my own guesswork. The only reason I've entertained the idea is because I walk strangely and very slowly at the moment, possibly as much to do with weakens as anything else, and it kind of feels the right thing to do to help as much as I can, also to give people a reason other than me being drunk, which obviously I'm not!

Good luck with your recovery.

LurkingHusband Mon 29-May-17 11:19:06

flowers to the OP

My DW has MS (initially R/R, but now 2ndary progressive), and used to walk with a stick, and then 2 sticks, but finally decided to use a wheelchair as the falls were getting more severe, and she had 2 consecutive ones that put her in A&E sad.

And it's doubly sad, but be prepared to lose friends if you start to use a wheelchair.

AStickInTime Mon 29-May-17 15:45:24

Interesting you say that, LurkingHusband, as I already lost the most surprising friends, the ones I was certain I could count on through thick and thin. Conversely, I was surprised by the people I would have guessed might flee, sticking to me like glue. Just goes to show how unpredictable humanity is!

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