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Autonomic Dysfunction Community
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Avatar universal

Dysautonomia mayo

Has anyone gone to mayo clinic?
What kinds of testing do they do for Dysautonomia there? It is going to be expensive coming from Canada. I am wondering if they will just diagnose Dysautonomia and send me on my way or will they actually go the extra mile and find the cause and potential treatment?
I cannot stand the thought of simply controlling my symptoms of there is a chance that there is a potentially treatable and curable cause of my Dysautonomia.
I will not stop search for an answer and cure until every single known cause has been ruled out.
My specialists here in Ontario are not interested in looking much further.

Thank you!!
2 Responses
Avatar universal
I went to Mayo Clinic and credit them with being the reason I got my diagnosis.  I had originally gone because of a months-long headache which was not responding to migraine medication (in fact, I was having very negative reactions to it).  The neuro I saw immediately thought Dysautonomia and POTS (specifically) even though she is not one of their experts in it and immediately ordered testing which turned out to be the case.

They will definitely help you get to the root cause of it but some of that workup can take time.  It will probably take significantly less time than it would take your doctors - but is still taking me a few visits over the course of months (I have to travel and do one visit a month varying between a few days to a week).  In my case, this meant getting diagnosed with POTS quickly, but we still needed to do additional testing to figure out what type of POTS it may be.  At my latest appointment they were able to add a medication which has been working wonders for me.  

If Mayo is an option I would definitely go, I don't even know how long I would have been completely miserable without them.
Avatar universal
just wondering what medication is helping you?
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