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i see dr. grubb, but when i talk about a symtpom for example; this burning sensation i get inside my arms, back and face and the increased urination and diarrhea after an attack. he doesn't say what it could be. i ve been seeing him since 2005, and see him about every six months. the guy is very compassionate, and takes time to listen but isn't helping me. is there someone more knowledgeable about dysautonomia. cleveland clinic maybe?

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Cleveland Clinic is right near by, and will have specialists across the many "ologists" needed to treat POTS or POTS related issues. Can't hurt to get a second opinion - even if you feel you will be "cheating" on Dr. Grubb :) He is a wonderful doc I've heard, but you need to get your medical needs met, nothing wrong with that.

Best of luck, keep us posted!

Claire

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Cleveland Clinic is very good, and the Mayo Clinic in Rochester, MN or Scottsdale, AZ are also very good. If you look at our home page, you'll find a list of other doctors that also specialize in our field. Good luck!

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I've only seen him once. I do know it took a month or so for his PA to call back to tell me to stop Mestinon (awful stomach cramps, diarrhea, vomiting, nausea)--explaining to his nurse when I'd called that my PCP told me I had to call him. I don't know when I go back--they would only tell me that I would get a blue card. In the meantime, I am seeing gastroenterologist (who really doesn't get EDS/dysautonomia) and brought up the nausea/GERD as poss. dysautonomia w/ my cardiologist but he didn't answer. Asked my immunologist who tells me fatty pancras and liver I have can cause issues with malabsorption/inflammation and told me to go off all vitamins/mineral supplements save only a 'nickel free' multiple vitamin (since I can't wear 'cheap' jewelry--she says same thing goes on in GI track if meds contain nickel). I seek out specialists who manage the particular problem as I think when I see cardiac specialist in dysautonomia, his interest/scope of practice is more in what is going on with my faints/blood pressure/heart rate/fluid retention and things like that but I could be wrong. He found my Delta Granule Storage Pool Deficiency and was well versed about my EDS but was not there to treat those things--just told me I needed to have PCP get me referrals to certain types of doctors.

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