Hi everyone first time posting in the forum, just after help understanding what’s going on I was diagnosed 5 yrs ago they think I had this for quite a while before that, my problem is my last 2 Mri’s have been stable always good news but I have got worse my walking has worsened and fatigue is off the scale. I don’t understand how I’m much worse and never really improve any advice welcome…I’m not on dmds ms nurse said I’d missed the boat for them and wouldn’t really help now …
I don’t want to beat a dead horse, but I hate the stress placed on MRI’s because of the McDonald criteria. I can’t explain the scientific specifics, but it’s quite normal to deteriorate while still having stable MRI’s. The fact that they use them for diagnosis is very misleading to people who don’t have new lesions but are noticeably worse.
The best advice I can offer is to treat your symptoms as best you can and just keep adapting to your new normal.
Exacerbations with MS can make you feel like everything is going or getting worse. If your walking is worsened and fatigue is off the levels, check your health and environment first.
For example warm weather will floor me literally i cant walk.
UTI makes me feel like I am dying.
So what may seem worsening can actually be outside factors.
Sometimes when we have a good period we tend to over do it. Also just because MRI shows no activity doesnt mean the brain has seen the results. The brain carries on regardless and if you have old lesions can still carry on screwing with you if your not feeling right.
if in doubt talk to your MS team. Try to keep cooler, drink a lot of fresh water, and rest more. xxx I have PPMS so never catch a break, but boy when its warm I feel like the horses have trampled me lol. xxx