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Neuropathy Message Board


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hey everyone was wondering if anyone was ever treated for the wrong neurapathy like i was. here is my story i was fine a little over a year ago i noticed i having a bit of a problem moving my toes and occasionally my handsa would go numb when i was sleeping. i went to a neuroligest he did an emg test that was it . started me on 5 day a month ivig treatments was having problems taking it i would go into shock get the shivers and would get really sick afterwards. after the first 5 day treatment he put me on 40 mg prednisone i am a type 2 diabetic it drove my sugar up to 500 i called him he said it would be ok i called my reg dr told her she called him and he wouldnt talk to her so she switched dr . I went to him he boosted the prednisone to 60mg and i had to go see an encronoligest they put me on 2 types of insulin still could not control it even checked it every 2 hrs they tried everything i told him he really didnt care i couldnt keep it under 300 as soon as the pills wore off it would drop to 50 or 60 most people gain weight not me lost 40 lbs because i couldnt eat anything. i felt alout better the first month had alout of energy. He changed the ivig to 3 days a month. after 2 months or so my legs blew up like balloons muscle cramps ect. they started blistering and popping was awfull had to use kotex and change it adleast 3 times a day. Right before christmas i was diagnosed with dvt (side effect from ivig ) i looked like a big bruise from all the shots i had to take in the stomich my immune system was so lo from the prednisone where my legs were leaking got infected spent 3 days in the hospital by then all of my symptoms were getting worse fast. i was missing alout of work in Feb of this year he added cellcept another immune suppressing drug all of a sudden towards the end of march i started falling all at once . i came home from work oleft a message he didnt call me back i went to the er i was afraid i had a stroke or something the dr told me i needed to get off the prednisone thats when i decited to try a different dr i did the research found the best 1 around took 3 months to get in. I started weaning myself off the prednisone and quit the ivig so i could get a fresh opinion. ended up in the hospital again the end of april another infection i kid you noyt my left leg was leaking about a qt a day . as sooin as i got to 10 mg of prednisone the faucet shut off . i cant walk without a walker now my hands are almost useless and i cant breathe when i lay down. the new dr did a breathing test an emg and a blood test the results confirmed i have cmt1a. i asked him why it got so bad so quickly he told me my sugar was so hi for so long it triggered it. has this happend to anyone else i cant work and signed up for ssi but it takes so long





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