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Jan 28, 2019 · Living with Neuropathy - Welcome to the group in Neuropathy

Exactly two years ago I was in the ICU and in a coma. The whole hospital/rehab stay was 2 months and coma was 2 weeks induced but I do not remember much till about 5 ays prior to getting to come home. I have Hemochromotosis which caused liver disease. We were unaware until one month prior to the hospital stay when I get to my GP for many things including a sudden swollen belly.. WHile in the hospital when I mentally came around I noticed my upper left thigh was numb to the touch and still is. No tingling, pain or sharpness, just completely numb. During rehab at home I noticed my hands were also numb LIKE but I could feel somethings and touch. Then it landed in my feet and lower legs. I also jerk sometimes without meaning to. I was diagnosed with PN and was told it is because my body shut down every organ to keep my heart, lungs, and brain working and that that caused nerve damage….permanent….THEY said! For the last two years I have been concentrating on getting heathly again. I am a walking miracle. Went from a diagnosis of 9 months to live, to the ICU stint, and now I am at at least 10 years till the need of a liver transplant!! I have work hard for this too. Now I am ready to work on the PN. The diagnoses was all I have had done. No special rehab…no whatever else there might be out there. I talked to my GP because I also swell and one ankle is a doozy. I can barely walk at night anymore and I worked hard to get out of the wheelchair! UGH. My GP is running test and so far, so good. My GI is wanting to look at some autoimmune thing I tested weakly positive for during my liver diagnoses. Anti smooth muscle antibody…..whatever that is. lol I am hoping that I give someone a clue that could direct me to the correct fix. Thanks for reading all this info…lol
LuAnn