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Hurray! A doctor who has heard of POTS!


Roselover
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Hi All,

I know I am new and don't know most ofyou yet, but I you all seem to share your ups and downs. I too have been in the POTS hole, just keeping to my own little corner until now. Nice to meet you all down here!

Since I was diagnosed I have been trying to rule out some of the more major causes of my POTS and severe fatigue. My family physician is fantastic - delivered two of my children and saved my life in one delivery - but she's never heard of POTS, never dealt with florinef... she's empty handed.

I've seen a neurologist, and infectious disease specialiast and cardio who started me on meds, but none of them seem interested in really helping once the initial treatments don't work. I have asked and asked to see an Endo and FINALLY yesterday, my family physician called with the name of an endo who will see me.

This doc just came home from a conference where they presented a POTS patient and he was the only one who was able to recoginze it and he is very interested and at least a little knowledgeable about the syndrome!

Not only that, I get in in two weeks - pretty good in comparison to my other specialists. AND he was very thorough in asking what I had checked so far. They were very surprised I hadn't had any testing done on my adrenals yet.

It's amazing how just having a doctor who is interested restores my hope. Like all of you, I don't want to put too much expectation on this visit, but I can't help hoping a little.

Thanks for listening!

Roselover

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Roselover,

I am so glad your Endo has heard of POTS and will do some adrenal testing. I went to Mayo and they did some ANS tests, cardio and the 24-hour catecholamine test, but they never really looked at doing any extensive tests on my adrenal functions either. Duh,,,you would think that would be elementary my dear Watson.

I just saw an endo yesterday who is also familiar with dysautonmia/POTS. He started asking me if any of my docs had put me on BBs, florinef or mestinon, etc. He said he definitely wanted to do some adrenal tests, kidney function etc. So he prescribed several tests which I will have done this week and next.

It is such a relief to find a doc who doesn't think your crazy or who has no clue about POTS.

Horrray! :D

Gena

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good luck with this new doctor.  sounds very promising!

Gena, please let me know what test they do. I have been reading past posting on endo tests but I'd like to arrive at my appointment with as much info as possible!

I've been on BB's, Florinef, Midrodine and Mestinon! (Not all at the same time B) )

I was actually in a drug study for Mestinon for fibromyalgia. I was a disappointment to them because I didn't improve with fibro symptoms, but I think it was really my POTS that was getting me down. It doesn't seem to have helped with my POTS either, but I am not righting it off - at another time in may come in very useful.

Good luck with your appointment. Please let me know how it goes!

Roselover

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Hi Roselover;

I am glad to hear about your finding a knowledgable doctor. I am starting to see this happening more and more in this forum. That is such great news for all of us. I truly think that someday this will be a well know syndrome and more with be learned. (sorry if I seem to be day dreaming) Hope is always good!

With dysautonomia being so complex it is no wonder that you have an Endocrinologist that is familiar with it. When I first learned about POTS I thought that cardiologists were the main doctors that were familiar with it. This is a very positive sign. My PCP is an Internist and he is working with my POTS.

The only thing that still bothers me is those doctors out there that still consider a psyciatrist the only doctor to handle this syndrome. The more we take a stand the more that will hopefully change!!

All my best wishes to you. I am glad you found a silver lining!!

Take care,

KathyP B)

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