kateybash 02/05/17
Last reply 9 months ago
How long between relapses?

As the title aks… maybe in desperation. What is the average timespan between relapses for people with rrms? Ok no medical jargon, just honest thoughts. Thanks x

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kateybash
9 months ago

Also would just like experiences. Thanks x


stumbler
9 months ago

@kateybash , it really is the “length of a bit of string” question.

There’s just no answer as no two people are affected by MS in the same way.

We do know a bit about what can cause relapses, e.g. stress, so we can avoid some relapses, I’m sure.


spunky
9 months ago

It’s been a year and nine months and counting for me.


kateybash
9 months ago

So interesting. Thanks for your responses. I am really a person who wants to know why….. but the replies to this question makes me realise how individual we really all are. Much appreciated x


tessa
9 months ago

Hi…it seems to me to be totally random…no wonder no one can get to grips with it!
I had a very bad episode of paralysis when I was 16. Recovered fully and then absolutely zilch for 45 years. Have recently had some mobility issues which according to Barts are a result of past damage and ageing. So there really is no point in doing anything other than living as fully in the moment as you can . If had spent the last 45 years worrying and anticipating I would be a nervous wreck and all for nothing,. I too now want to know why and still have so many unanswered questions but as the experts don’t know either it’s small wonder we don’t.


anxious123
9 months ago

@tessa did you take any medication for ms during those 42 years? Or change diet?


tessa
9 months ago

I was given something called ACTH gel when I had the episode,which was diagnosed very quickly … as MS by Barts in 1965. According to Professor Giovannoni this is sometimes still used in America, The paralysis which was from waist down lasted for 6 months and I then made a total slow recovery. No other meds or anything,. I never saw another doctor. so I am glad I didnt live my life saying “what if” I married and had two children and no further problems until recently. There are so many different stories and in my opinion after all this time still no cohesive narrative.
Tessa


isaacson72
9 months ago

In hindsight, the vision problem I had when I was 21 (in 1993) was likely MS but who really knows. I wasn’t diagnosed then. No further problems for 22 years. I had a relapse in 2015 that ran a couple months into 2016, but nothing major since (lots of ms-related problems, but no full on relapse) – knock on wood.


kateybash
9 months ago

Tessa, that is an amazing story of your life… I am naturally a positive person but think I have had my confidence knocked by the balance and foggy brain. So great to hear that relapses can also be years down the line, that has given me fresh hope too. Thanks for sharing.
Kate


anxious123
9 months ago

Agree that hearing relapse may be years away …am just recovering…very slowly…from first episode of cis but mri suggests highly likely ms..still not driving due to clutch leg being weak but hopeful that now 3 weeks after steroids i will get better .

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