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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I have been researching this.....I may be wrong but,
Currently, top of my list is Vanderbilt and dr. Stewart's group. They have both been active in cutting edge research ..
You Vanderbilts center is huge compared to other clinical settings, from what I can tell.
http://www.mc.vanderbilt.edu/root/vumc.php?site=adc
http://www.nymc.edu/fhp/centers/syncope/index
I have jmany research papers, if you are interested.
Anybody seen this Doctor ? I am thinking about it for Dysautonomia.
Anybody seen this Doctor ? I am thinking about it for Dysautonomia.
Comments submitted by patients:
I just wanted to say that Dr. Blair Grubb, MD in Ohio is the most informed and kindest doctor I've ever encountered in my lifetime. He always takes the time to listen intently to you and always tries to give you new ideas and new things to help you even if nothing has worked in the past. He doesn't give up on you. He is very knowledgeable and skilled . His clinics often run behind schedule because he takes time with each and every one of his patients. He cares so much about each one of us. He once sent me the book "When Bad Things Happen to Good People". It was after my first visit to see him, and I didn't even know that he'd remember who I was. He is the best and nicest, kindest, smartest doctor ever and he knows an awful lot about dysautonamia and NCS and POTS. He's written many articles and journals and books. Thank you for letting me tell you about Dr. Grubb.
@Gingergrrl I went to Cleveland, The clinic is good when you do not have tipical POTs the tests are good BUTTTTTTTTTTTTT $$$$$$$$$$$$$$$$$$$$$$$$$$$$ My bill was about 20K!!!
All I got extra was betablocker, so if you already are on florinef+bb+midorine all you have left is to adjust meds as much as you can. POTs is more about management which you have to learn to do your self and a doctor to prescribe.
Dr. Grubb is in Toledo. He has lots of tricks up his sleeve--if he is still in practice. The thing about Vandy is that you can't choose your doc--kind of Russian Roulette. People seem to do better there as research subjects but that requires a fairly long stay.@lnester7 Sorry for my confusion but did you see Dr. Grubb or Vanderbilt or someone else? Just wanted to clarify.
@Gingergrrl no I went to a complete hospital in Ohio. Yes the testing was extensive at Cleveland clinic.
Dr. Grubb is in Toledo. He has lots of tricks up his sleeve--if he is still in practice. The thing about Vandy is that you can't choose your doc--kind of Russian Roulette. People seem to do better there as research subjects but that requires a fairly long stay.