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Managing Care Far Away From Specialists


IceLizard

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I've been home from the hospital for about two weeks now. I have not had another serious attack, I can walk again and do some basic things, but mostly I have this overwhelming mental and physical fatigue. I can sleep for 10-12 hours at night, then two or three or four hours during the day as well. I feel like sleeping or resting almost all of the time. It is debilitating. I have switched my cardiologist and ditched my neurologist but I have retained the same pcp. Being in Northern Louisiana, I am far from doctors who specialize in dysautonomia and the conventional treatments are not enough. I have not had a full autonomic workup and I might need further testing to be able to pin down what is going on with me so it can be directly addressed. I have asked Dr. Svetlana Blitshteyn about the possibility of a phone consultation because I saw on her website that she is doing those now. Has anyone had a phone consultation before? How do you manage this condition when the doctors who treat it are so far away?

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I know from my perspective that this is hard. And I think that there are a lot of people who can relate to this. My POTS specialist is about 4-5 hours away from me so seeing him regularly is quite difficult. I have a cardiologist and PCP at home (also ditched my Neurologist), but its difficult because they are learning about POTS with me. This has made any treatment that we do attempt more difficult, and much slower to happen (and generally I'm the one who suggests it). Some Clinics and Hospitals that are highly specialized sometimes will do phone appointments, and coordinate with your local doctors after you have been initially tested and diagnosed. So I don't know if it would be worth looking into doctors at those kind of facilities. Did you have a specialist who initially did some of the autonomic workup? or was that your local doctors? If it was a specialist somewhere else perhaps they can try to coordinate with your doctors back home to making an effective treatment for you.

Hope that this was helpful,

Fainting Goat

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I'm in the same boat. I'm in mt. Closest center I think is in az. Mayo. Anyway. I got my ttt here. Trying to get my norepinephrine level drawn. One doc said no. The other said yeah, but didn't follow thru and gave me a script for 2 meds. Scared to try. Small town. All cardiologists are in same practice. I've toyed with the idea of MSG dr S as well. Let us know how it goes.

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