Autonomic Testing Centers and Neuropathy

[mtgardner]

I need some quick advice.  I am meeting with my primary on Tuesday to decide on a testing center.  My presenting dx. was pure autonomic failure but now I have had tests that add in neuropathy.  In addition I need to rule out collagen disorders, hyper-mobility syndromes, mast cell involvement, Sjogrens, and Thymus problems due to other symptoms.As far as the neuropathy is concerned I have only had the regular test nerve/muscle tests in the legs and feet.  Because the doctor said my Hashimoto's was the probable cause that makes me think retained fluid might be pressing on the nerves and makes me wonder if I need that fluid volume test some have mentioned.  Does anyone know what it is called and where it is available and if it is applicable?  I also wonder if I should have the QSART.  I know both of these are available at Cleveland Clinic.  What is available at Mayo in Arizona?  I have lost track from all the discussions.  Vanderbilt? Marie

[tkimber]

Hello, I'm so sorry, for some reason my computer didn't send me an update.  Will have to change my settings.  Anyhow, yes, ask for Dr. Goodman, he just came over from Mayo in Rochester in August.  He was very thorough.  They have a full autonomic lab.  I had the Qsart which is very important.  It was a really good experience.  Let me know if you have any questions at all.  Good luck and God Bless.  

[mtgardner]

I had my visit with my primary yesterday.  I thought from all that was said Phoenix wasn't so well equipped  so when I talked to her I didn't even bring that up as a possibility.  Phoenix for sure would be a lot closer.  I appreciate very much your report. Marie

[tkimber]

Hi.  I just wanted to tell you that I recently went to the Mayo in Phoenix, they have a full autonomic lab.  See Dr. Goodman, he was great.  They have the QSart machine that is so hard to find.  My insurance didn't cover it, but he was willing to do the basics and minimum and let my doc back home in Nevada do the blood tests that were covered by my insurance.  He is very patient and is actually from the Mayo in Rochester.  He recently came back to Phoenix.  I came up Idopathic Autonomic Neuropathy and for some strange reason I also have the crisis.  We are still working on the reason which my docs are doing tests here.  Please let me know if you have any other questions.  

[beema36]

Marie, I am sure u have already thought of.this but could u call those clinics and ask what's available at each facility? I would think they would be willing to.tell u. Or maybe your Dr could get this information for u.
Good luck wish I knew more to.tell u.
Beema

[beema36]

Marie, I am sure u have already thought of.this but could u call those clinics and ask what's available at each facility? I would think they would be willing to.tell u. Or maybe your Dr could get this information for u.
Good luck wish I knew more to.tell u.
Beema

[mtgardner]

I live in far northern California near the Oregon border.  I would not go to Arizona if they do not have a good autonomic testing facility.  I gave up on finding anyone here who is familiar with dysautonomia and decided instead to find really good doctors who are willing to learn and work with me and can get me to specialists.  I realize I need to get to those specialists and use them as a resource long distance.  Marie