Reply To: Relapse vs Rehab

sorry to hear your going through this.. no fun! Some people can also get weaker with prednisone- steroid myopathy.. Are you doing maintenance IVIG on a schedule, or only when you are in “crisis”? From what everyone says on here, it seems the general thought process is that you need to get IVIG (if that works for you), before you feel like your backsliding symptomwise… they say that if you feel like you are declining before your next infusion that permanent damage may be happening
I know with me- I only had very mild muscle atrophy when I was initially hospitalized (it had been going on for a couple of months at that point), but the atrophy appeared to be going very fast.. once I got IVIG initially, the atrophy seemed to dramatically slow.. I do have some progression in atrophy diffusely over the past 2.5 years, I always wonder if it is atrophy from the initial trauma of it all that just slowly showed up (delayed appearance), or is muscle damage continuing? I am much much stronger than i was 2.5 years ago, so who knows!

Any virus/illness and stress exacerbates my symptoms and can send me into a relapse, which is incredibly frustrating… currently having that now, thanks to a nasty cold and cough!
Good luck!