If you click on "Members" at the top right of our community, you can link to individual members' pages. Some members have very limited information on their profile pages where others have much more extensive profiles. You can read through a member's past posts from his/her profile page, view pictures, see any trackers/journals that have been posted as public, etc. I'll offer myself up as a guinea pig to give you an idea of a profile page with more than a little information, but I'm sure you can find others:
I can tell you the my symptoms are horrible. I need to be horizontal 95% of the day. I cannot stand or sit for more than approx. ten minutes. Severe back pain, drenching sweat, tremors, trouble breathing. I have small and large autonomic neuropathy, along with the nerves going to my heart. I will be checking out the above site also.
I recently purchased a power wheel chair that tilts and the legs lift. W/O it, I wouldn't be able to go anywhere, although I am fine walking from room to room in my house.
My dr. said that I am in the 4% that cannot be helped and he will just try to keep me comfortable - not what I wanted to hear.
Good luck, and looking forward to hearing your symptoms. Hopefully, they aren't too bad.
I was dx'ed around three months ago, with a grim prognosis. My neuro referred me to Mayo and they said they cannot help me. I got a second opinion from a local neuro. Initially he said I had to go to Mayo also, but after viewing test results said not to waste my time or money and that I am in the 4% that cannot be helped. He said he will do what he can do keep me comfortable. Unfortunately, there are no medications for the worst symptoms.
In the meantime, I could just drop of a heart attack, paralyzed diaphragm or other organ failure. I am seeing, yet another neuro, this Wednesday at the University of Miami. He is the one that did my initial nerve conduction test, but not the dr. that ordered it.
What is your story? I'll let you know how I make out on Wednesday. I still have a million questions.
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