Just that really. Interested to know how stable people normally are and whether they have good/bad days/weeks. Over a year on and I’m still not really sure what counts as a relapse.
Charlotte x
I remember the first year after diagnosis that I felt I was never without severe symptoms. I kept waiting for the “remitting” bit to happen.
That changed when I started Tysbari.
Have you been put on a DMT like Tysabri or Ocrevus?
I take tecfidera but wonder if something stronger would be better…
Did you take something different before tysabri?
Quite a lot (20+ years in). I have a baseline set of symptoms/weaknesses etc that are there all the time - permanent hangovers from past relapses. It never gets better than that, but it temporarily becomes worse when I’m tired/overheated/ill. When I way worse, I mean that the things that are wrong already get worse/weaker etc, and some old damage that isn’t normally an issue pops up again. Plus less specific but more general malaise and fatigue.
I haven’t had a relapse as such since starting on Tysabri 10+ years ago after 10 years on Avonex (that’s when I was relapsing)
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Thank you that’s really interesting and reassuring. I was having an awful run of symptoms last week and have since tested positive for covid, which I’m praying explains it rather than it being the start of relapse.
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Good bet you’re right: raised temperature causes havoc with tattered wiring. Get well soon.
No. I was put straight on Tysabri. My sister had been on it for a few years and it had been brilliant for her so the neurologist agreed to put me on it. Sadly I now have to switch to Ocrevus as I became JCV + with a high reading.