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My MS doesn't follow a pattern of relapses or progression. Does anyone else have this?

I just posted something about constipation, which has been an ongoing problem for me but has pretty much gone away now. I have had the same thing with urinary symptoms. I had big problems for years but now I am much better. These things went on for much too long to be a relapse and obviously they are the opposite of progression. I have un-progressed.

Have other people experienced similar things? For me at least, it feels like the standard description of what happens in MS is just wrong.

Hi I had bladder and bowel issues which seem to be resolving, I’ve not wet myself walking for over a week now - i’m pleased about that. However I am progressing in other ways, I had a cold infection a few weeks ago and my back and legs are so painful and stiff they are not getting better.

My bowel issues have lessened too, I’ve regained a little bit of push ability which has enabled me to be a little more lenient with what I can eat. Went through a year from a relapse in March 2014 when I had to heavily modify my diet to be able to prevent constipation. What a performance!

  • no grains apart from oats
  • no processed food
  • no red meat
  • never ever more than 1 egg
  • no cheese
  • very little dairy
  • loads of veg
  • loads of fresh and dried fruit
  • BEANS BEANS BEANS
  • no bananas (OMG bowel glue!)
  • no cooked carrots, because apparently those bung you up too (who’da thunk?)

but by the same time last year that little smidge of ability had returned. There hasn’t been any further improvement, but I’m very happy that what has returned has stayed so far, I can eat the odd biscuit again without fear of reprisal of the nastiest kind.

It’s hard to understand why some things improve and others don’t isn’t it. Also how some things are bad for a very long time and then improve. I’d be interested to know the science behind it (if my cog fog would let me understand it of course!)

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That’s exactly what I’m confused about. My walking has got worse while I’ve been seeing improvements in the other things. The idea that some bits get better while other bits get worse is never mentioned in the descriptions of the various types of MS.

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Yeah got to agree, it’s not something I remember seeing mentioned anywhere.

I’ve had problems with having the urge to urinate all the time, even when I’ve just been, which resolved by the time I get an appointment to the neuro-urodynamics clinic. All the fun tests showed that I didn’t have a problem - at that time. I was left feeling as though I’d made it up!

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Becca that’s one of the worst things, isn’t it. That feeling like a fraud thing.

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i think its the nerves that repair themselves in certain areas,sometimes taking years to do so.

J x

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I think you’re right J - but it isn’t how MS is described by anyone. Even the most expensive (best?) DMTs are only meant to slow down progression. You wouldn’t get the idea that people are going to un-progress.

the brain and how it can repair its self will remain a mystery for a long time.

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yes, the ‘honest, my hands weren’t working two weeks ago…’

hi

i agree, the descriptions of ms do not apply to everyone!

Becca T - betmiga has almost changed my life!

i am no longer in danger of wetting myself in public .

if you can possibly get this on prescription, do so!

carole x

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