Neuro/Cardio Doctor or both??

[Sue]

I only see Dr. Grubb and my primary physician. But I noticed alot of people see Neurologists, can you tell me if they do anything different for you and what??

Thanks

Sue

[POTSparent]

In the case of my daughter, any time you got just a little bit out of the doctor's "comfort zone", they'd send you elsewhere. And believe me, POTS gets out of their comfort zone quickly. We've had pediatricians send us to cardio's because of the BP issues. Those cardio doctors do the EKG's, echo's, etc. As soon as a GI symptom would flare up, it was send you to a GI specialist for a colonoscopy. First sign of a headache, better have a neuro do a MRI. So much money went down the proverbial drain until the POTS diagnosis and treatment by a specialist who understood that symptoms would appear on all fronts -- cardio, neuro, and GI. However, certainly I'm hopeful that those seeing neuro's here are finding some relief by their treatment.

[futurehope]

Actually, now that you brought up the subject, the doctor who researches POTS at National Institutes of Health in Bethesda, Maryland is a NEURO-CARDIOLOGIST (both). Anyhow, it's my gut feeling that the most important thing is that you have a doctor that is familiar as he can be (being as there is no magic cure) and willing to send you elsewhere when he feels someone else might be of benefit. You, as a patient, have to ask the questions and suggest referrels if necessary. In my case, anyway, POTS affects so many different body systems that there really can be no "POTS doctor" who understands them all. I cannot believe that any medical school gives any one doctor enough information about ALL the processes involved. On that note, Dr. Goldstein at NIH seems to have quite a bit of training, but, HE DOESN'T treat POTS, he only researches and gives suggestions (as I understand it).

[Ernie]

So far, I went to 3 neurologists and I had no success with them. I see an electrocardiologist who is so-so and I go to Dr Grubb when I can afford it.

Ernie

[POTSparent]

I tend to disagree with the idea that there are no "POTS doctors" because they can't be knowledgeable on so many things simultaneously. The problem, from my family's experience, is the the cardio will load you up on cardio medicine, the neuro on neuro medicine, and the GI on GI medicine in a totally uncoordinated manner (all the while knowing the other medicines that one is on) all due to their lack of understanding about POTS in general (probably only was one paragraph in a textbook in med school). There are dysautonomic specialists out there (yes, too few). And a good one can "quiet" some of the symptoms that the GI's and neuro's and cardio's were allegedly being called in to treat. Find a dysautonomic specialist (yes, you'll probably have to travel a couple of times a year) and you likely won't need a separate "group" of doctors.