hey everyone, I hope you’re good. apologies here, it might be a little convoluted.
I had one relapse two yrs ago and have twice seen my neuro this year; he has twice felt my MRIs look very encouraging and has felt that, at this time, to hold fire on DMTs. I was diagnosed with AS ten years ago but that is thought to have “burnt out”
for the year following relapse (pre-diagnosis) I lived largely normally - very busy independent living, a lot of travelling and hiking - albeit with symptoms and the uneasy sense things weren’t right. the year since diagnosis has been torrid: severe pneumonia in summer, several nasty flares of Uthoff’s phenomenon, colds and flus.. a battering.
in the last six months, in the UK, I’ve had the uneasy feeling my left leg has been weaker, wobblier - almost bending backwards at the knee - with toe curl often and the muscles feeling out of whack. I have had some difficulties walking.
yet during sept/october, I went on trips to scotland, barcelona, and the south of france and found walking dramatically improved: hiked for nine miles or so in scotland no issue, with walking around spanish/french cities for miles each day.
this has left me profoundly confused: am I fit or am I ill? why does the body swing between extremes from feeling fit and strong to very much the opposite? one yr on from diagnosis, it seems the more I learn about MS the more confusing it feels and I can’t make any sense of it. I don’t understand how my MRIs can look okay while some days symptoms are so severe and other days I feel exceptionally fit.
given this confusion, I feel slightly reticent in posting this. but does this feel familiar to anyone? can anyone help me make any sort of sense of it?
Hi @jamesdjgale . I’m no expert but I’m thinking that your experience makes sense to me . It must be near 20 years since my diagnosis and until last year my annual MRIs have shown no new lesions. For around 8 of those years I lived a normal life with no symptoms until quite suddenly and after walking for 40 mins or so I had problems moving my right leg. Those problems with walking much beyond 30 minutes continued . Then around 4 years ago I got quite bad Covid and for a week or so I just couldn’t walk at all. It was maybe 6 months until my walking ability returned to pre Covid level. Infections/ illness of any sort inflame the immune system which in turn will have ‘inflamed’ the MS - particularly any visible lesions and it can take ages for the immune system to calm down/ stand down. I’m guessing that this is what happened when you had those months of flu, pneumonia etc.
I’m always ultra careful about avoiding flu and Covid during the winter months especially e.g going anywhere with large numbers of people in enclosed spaces .
These days I struggle to walk without sticks or a Rollator. It’s still my right leg that is the problem and yes it feels wobbly, weak and is very prone to hyperextension ( bending backwards). There are devices to help with hyperextension- might be called Stockholm Cage or something like that. I can’t remember who but there is someone on this forum who has experience of using one.
I’m thinking that yes you are fit but you have MS and sorry to be blunt, it will slowly erode/ damage your brain and nerves especially those that control movement. You can have positive MRIs with no indications of new lesions but over time and without any new lesions the MS worsens- classed as ‘Secondary Progressive’ or ‘Progression Independent of Relapse Activity- PIRA’.
My experience of MS is that yes, you can have bad and good days or weeks. Lots of people including me find their symptoms are worse/ much worse in the heat or any infection
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I’m not sure there’s much sense to be made. The physicists tell us that there is no event without a cause - it’s just we haven’t figured out the equation yet. And I expect they’re right, but good luck working out MS’s equations. All that 25+ years of it have taught me is to try to just deal with whatever comes along, day by day. No use busting a stay trying to work out why. That’s been my experience so far anyway.
If you have a problem with hyperextension, look no further than a Fixed Swedish Knee Cage. It took about a year of wearing one, but sorted my problem and never needed to use it again.
Hyperextension can be a huge problem if left unchecked, because ligaments are not elastic and once stretched do not recover.
I got mine from the NHS and this is for illustration purposes only.
Fixed Swedish Knee Cage - Chaneco
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