Dysautonomia (Autonomic Dysfunction) Community
Cleveland looks promising
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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Cleveland looks promising

My son had his appt. in Cleveland on Monday.  There was a mix up when I scheduled my appt, and they didn't schedule me for the doctors office where she treats autonomic dysfunction.  He would have also been told to stop his medicine so they could do testing.  So we have to go back (9 hour drive) the week after next (19th).  BUT I am just glad that we weren't just told he's depressed, see a psychologist.

They are going to do the Tilt Table and several other GI tests, since he has abdominal pain and nausea.  The doctor told us not to lose hope, she has helped all but 3 of her patients have a better quality of life.  

My son enjoyed the trip, kind of a mini vacation(hotels, eating out every meal).  Hopefully, we can at least can him back to school.
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My husband went to CC syncope clinic, saw a older woman doc, Dr, Fouad...was less than impressed with the clinc, mainly because it took moving earth to get them to give us results, and never scheduled follow up, never ordered the rest of tests they recommended....they have wonderful testing, but if the info is not used, or relayed.....a waste!!  Hope your experience is better than ours was!  Will probably never go back to CC....there is an excellent doctor in Toledo, Dr. Blair Grubb, that we are going to see for his dysautonomia...suppose to be a very compassionate, caring doc!  He was sick himself, so it will take some time to get into.  SO make sure you ask for a copy of all your testing, so if you need to you can take it to him.  If you send me a private message I will expand more on experience there/ M
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Avatar_n_tn
I just had my first appt with Dr. Blair Grubb's office. He has an 8-10 month waiting list, BUT if you ask to see his nurse practitioner (Beverly) first, her wait list is only 1-2 months. Once you see her, you are considered a patient of Dr. Grubb and are on his regular appt list rather than the wait list. She is EXCELLENT. She spent 2 1/2 HOURS with my husband and I, explaining everything, answering questions, etc. She is very respectful. All medical records regarding the disautonomia have to be sent in first, and she told me she "had been studying them last night..." I couldn't believe I had been her homework--that she hadn't just glanced at the records 5 minutes before she walked in, as every other doctor seems to. Because my case was apparently somewhat unusual, she said "You'll be my homework tonight too."

I had previously been at a hospital that bragged they were "one of two of the best hospitals in the country for autonomic disorders." I spent five days inpatient and was still released undiagnosed, with no help or meds whatsoever, a $22,000 bill, and was told my problems were psychogenic and "when you go home this should all gradually clear up in  a few weeks."

I asked Beverly about this and she wrinkled her nose, said that hospitals researchers were trained at UT, and that the researchers and clinicians there "do not communicate very well with each other." She said that they refer many of their patients to Grubb's office. She also mentioned that Cleveland Clinic was "excellent with diagnosis, but terrible with treatment" and that they get a lot of their patients too. 70% of their patients are from across the country, outside of Ohio, and another 10% are from outside the US.

Thankfully, I live in Ohio and their office is only two hours away. Not a bad commute, and I can be there and back in the same day.

Hope the tip about seeing Beverly first is helpful...
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