George, I have known too many people and/or read about too many people who had several doctors who didn't communicate with each other and came quite close to killing their patients because of all the different drugs being pumped into them that conflicted with the other drugs being pumped into them.
I just ask that you make da***** sure your doctors are communicating.
Lacy, I put a team together of late that I feel pretty good about. Communication is a little short, but not like it was. I fired all of the originals, LOL.
I have learned that the best person to run this show is me. No one is going to push like myself. I have gotten a lot done in a year.
I have done about all that I can do, and they have to. I am going to Mayo in May, and will probably not learn more than I have. I will at least be able to walk away and feel that I have done what I can. There are a few more potential causes to check out.
I will not get on too may meds and be doped up on top of it all. I am only on one, and will soon try another. I will try to make improvements, but there is no magical fixes. Small victories is all you are really after. A lot of things make your vitals look better, but you do not feel any better.
What it is, is auto immune autonomic neuropathy. Possible sensory and sudomotor neuropathy. Why, is still the question. At some point, I may just have to settle with my new reality. I am not above having to deal with something like this. A lot of people have challenges and at all ages.
I met a woman online that had what I have. Then she found out that she had cancer. Stage 4 cervical cancer that spread into her lungs etc. She was in so much pain already, it got overlooked. Then I found out she was deaf. Then I found out she was only 24. All of the while she was encouraging me. I will never feel sorry for myself again. Or forget her. She was upbeat and optimistic until the end.
All of the online nutrition information in the world will not touch some things. There are a few herbal supplements that can make some things a bit more tolerable in the mean time.
For all that we know, there is so much that we do not know. A lot of what is true today, will not be tomorrow.