Reply To: Your top signs that your CIDP is coming back/getting worse

April 5, 2017 at 6:44 pm

Hi everyone, i am new to this please be patient, i was diagnosed in 2008, since then i have relapsed every time i contract a viral infection, the signs are the same as i have been reading here, taste is a big one, numbness, tingling and cramps usually a week to 2 weeks after the onset of a virus, over the next 3 to 6 weeks paralysis sets in. Initially i was given ivig, my second dose ended in seizures, so they started 1000mg methylpred a day for 5 days,at the onset of symptoms, 2 days ago i received my 5th course. I am not sure what to expect, no paralysis? (over shot that runway) it does help me breathe, and seems to shorten the muscle atrophy.. Now they are talking about metaxalone? weekly doses … Does anyone have experiance with this? I really am at wits end, i live in a very rural area, and although i have a vast medical team and all the usual people, i am so alone, no one understands the amount of effort to get from my wheelchair to loo or bed, the total exhaustion, just having a cuppa with people, i try so hard to be strong, get up and get on with it, i just wonder sometimes, if any of it is worth it. Not sure if this is the right place to ask, but i would like some other peoples experience with treatments and if and how they work. Thank you Kaylee