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.
Copyright 1994-2017MedHelp International.All rights reserved. MedHelp is a division of Aptus Health.
The Content on this Site is presented in a summary fashion, and is intended to be used for educational and entertainment purposes only. It is not intended to be and should not be interpreted as medical advice or a diagnosis of any health or fitness problem, condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or course of action. Med Help International, Inc. is not a medical or healthcare provider and your use of this Site does not create a doctor / patient relationship. We disclaim all responsibility for the professional qualifications and licensing of, and services provided by, any physician or other health providers posting on or otherwise referred to on this Site and/or any Third Party Site. Never disregard the medical advice of your physician or health professional, or delay in seeking such advice, because of something you read on this Site. We offer this Site AS IS and without any warranties. By using this Site you agree to the following Terms and Conditions. If you think you may have a medical emergency, call your physician or 911 immediately.