kaylee

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  • April 6, 2017 at 6:20 pm

    Hello Jim and thank you for your kind words and informative links. Yes, indeed 2008, what can i say!
    Today i seem to be laughing again, although i have tears in my eyes and a cup of coffee dripping down my legs because i was reading and not concentrating on where the table really was… Sad i now laugh at my sensory mishaps, guess after 9 years something had to give, pretty sure its my sanity.
    Prednisolone yes, i have 5 days at 1000mg of Methylprednisolone at the onset of each relapse, strangely the last 3 have been 3-4 months apart and this time i am sure its improved, paralysis seems to be lower although the rest is numb, tingling, cramping and very nervy, i do have some sensation where usually i do not. So something is different.
    As for anaphylaxis after IVIG, not sure, but definitely wont be doing that again.
    many thanks Kaylee

    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