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Dr. Grubb, Alabama, Vanderbilt.......


Beccapooh
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Okay, so my "wonderful" cardiologist has determined that I don't have POTS (because my heart rate only increased by 28 beats per minute and not 30......whatever). Anyway, so I've contacted my PCP and he's said that he'll go ahead and perfom whatever blood/urine tests I want, but, that in the end, he can't really DX or treat any form of Dysautonomia. Okay, I understand that.

My question here is this, do I really have to go out of state to find a doc that can (will) DX and treat me? I can't even believe this. I live in a large suburban area (Denver, basically) and there isn't one single doctor in this entire area that knows anything about autonomic dysfunction? Can this be possible?

Y'all keep saying to "find an autonomic specialist", but I don't know how to do that? I only have a limited amount of resources (as we all do). But, doubly so, since I've already paid a fortune to be DX with Myasthenia Gravis, which I don't think, now, that I've ever had!!! I don't know how to figure out who does and does NOT have a clue about this disease. I have to stay within my network of insurance, obviously, but, what do I do call every single Neurologist in the list? Every single Cardiologist? Nephrologist? Endocrinologist? Where do I start? I mean, I was lead astray by the claims that this last Cardiologist "knew about POTS" and was going to DX no matter what (her words, not mine)!! Basically, she didn't know anything, obviously, other then 30 beats per minute means POTS. Period.

The idea of the expense to go out of state for another "maybe" DX is almost too much to bear. What if it comes back that I don't have THIS disease either?

What tests should I have my doc here do to rule IN the Dysautonomia and VEDS (anyone with EDS please, I need your help, too!!!) Is it the 24 hour urine? The collagen blood test? The genetic collagen test (DNA)? The Catecholmine blood test? HELP!!! I'm so confused right now. I feel so defeated, so frustrated. I know, in my soul, that this is finally it!! This is what's been wrong with me, my whole life. It's an answer to prayer really, but, at every turn, I feel that I'm being pushed away!!!

Any help here would be so appreciated!!!

Bec

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Rebecca,

When I moved to DC from Hawaii, I essentially had to pull out a phone book to find my doctor. I called at least 30 practices all over the metro area, and scheduled appointments with the four or five who said they had "experience" with POTS. From there I picked the doctor I got along with best.

My cardiologist still isn't perfect. He has experience with POTS, but none of his POTS patients are as sick as I am, so he's had to re-educate himself a bit. For example, he'd never even heard of midodrine when I came to him.

For my actual diagnosis, I went to Vanderbilt. It was expensive, even though Vandy covered the costs of my hospitalization etc. The office visit, gas to get down there, hotel fees for the first and final night, plus food costs for my boyfriend and father all added up to nearly $1000 out-of-pocket. Was it worth it? Yes and no.

I'd reccomend taking another shot to find a doctor in your area before you look to Vandy or Mayo. If you can't find someone on the forums here, you might want to do what I did and just start calling places. Dysautonomia is a rather nebulous word, and many practices balk at the term (since it's also used by CFS and Fibro patients) so if you do call and ask, using terms like "MVPS", "Autonomic Neuropathy", and "Orthostatic Intolerance" to describe your symptoms will be better to narrow down your search.

I'm sorry it isn't easier. But I've learned that the medical system is a "self-serve" system. I've gotten exactly what I've put into my diagnosis and treatment. If I'd not advocated for myself and fought as hard as I've had to, I'd still be bedbound in Hawaii greying out every time I tried to go to the bathroom.

Hugs,

Lauren

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Just a thought...have you signed up for the "meet others" program through DINET? It basically gives you contant info. for others in your state and surrounding areas. Perhaps someone participating in the program could give you some advice as far as a doc. in your area. Not everyone is active on the boards especially in the summer so they may have missed your posts.

I also agree with Lauren in that you may just have to open the phone book and see what you can find. I would start with the specialists others have already suggested...it's also good to check local medical colleges with hospital affiliation...med. schools are usually up on the latest disorders (even the so called "rare" ones).

If you still have no luck then the only other answer would be to travel to a specialist IF you HAVE to have your dx. confirmed. It seems that you are pretty sure of whats going on with your body...have you tried the non-medical treatments listed in the "what helps" section on DINET? Perhaps you could find a GP in your area that would be willing to learn about POTS and start you on some medical tx. Pretty much all of the medications used to tx. POTS were put on the market for other disorders so most docs. should be familiar with the medications even if they aren't familiar with POTS.

I hope you find what you are looking for. :blink:

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Can I ask where you went in the first place? (I go to school in Boulder).

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OK SO I, too, have to find a new doc out there, and I spoke to a nurse yesterday who gave me the number of Rocky Mountain Cardiology. BUT- when I called there, the triage nurse I spoke to said that for dysautonomia, we should really go see Dr. Cole in Colorado Springs. The number is (719) 634-6671.

I won't be out there for another month, but it might be worth a shot. And that's a lot closer than Nashville.

PS the cardiac nurse I spoke to said she had JUST been diagnosed with POTS, and asked what treatment I was on.

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LukkyCharm24-

I've only been (Cardiologist wise) to Aurora-Denver Cardiology, but, was referred there and to Dr. Eldridge specifically, by my Neurologist Dr. Shah. He and she treat a "real" POTS patient together. That's why I had hope that she'd be not only willing, but ABLE to treat me. Turns out, if it's not your standard straight forward 30 beats per minute POTS patient, she doesn't want anything to do with us!!!

She didn't even know that there was any other type of Dysautonomia other than straight forward, true blue, POTS!

I will see if that doc in the Springs takes my insurance. Thank you so much!!! This really could save my life!!!

(((HUGS)))

Bec

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