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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Apr 25 10:43pm | Replies (5972)

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@luannfuller

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

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Replies to "Exactly two years ago I was in the ICU and in a coma. The whole hospital/rehab..."

Hello LuAnn @luannfuller, welcome to Mayo Clinic Connect. It sounds like you have been through a lot. I like your attitude and wanting to learn as much as you can about your health condition. Being your own advocate for your health is definitely job number 1. I'm tagging our moderator @lisalucier to see if we should move your post to the following discussion where you will meet others with similar symptoms and your post will have more viability.

Groups > Neuropathy > Living with Neuropathy - Welcome to the group
-- https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

I too have neuropathy with no pain, only have the numbness and some tingling. I was diagnosed with idiopathic small fiber peripheral neuropathy a few years ago but have had it for more than 20+ years. The neurologist told me there are no medications or topical cremes, etc. that will help with the numbness. I believe diet is extremely important for those of us with autoimmune diseases, probably a true statement for anyone. ☺ I started my search for eating healthier after reading a book by Dr. Terry Wahls - The Wahls Protocol. She has an interesting story of curing the symptoms of MS but not the disease. If you are interested, you can find more information here: https://terrywahls.com/about/about-terry-wahls/

Can you share a little more about the tests your GI doctor wants to run?