They do but it will be years until I can be seen :(
I have the financial means to travel but travel involves hours of upright time and I can't do that . I would travel if I knew I'd actually get treatment, but so far it's just been specialist ping pong. Vascular specialists want me to see neurology/rheumatology. Neuro wants me to see cardio. Cardio gives zero fucks about POTS at least the ones I have found. and it goes on and on. It's a nightmare.
There is a clinic opening in New York early next year. If I can get in, I will likely go there. Still not sure how I can get there without passing out but that's a problem for another day.
Yes please ask your friend, I also have two types of migraine, so that's not a bad suggestion.
That's why I like the Mayo, you essentially go in and you are inpatient and they address all of your issues while you are there from all specialties. None of the ping pong between specialists. But that would entail travelling to either Minnesota or Scottsdale. And first they have to accept you as a patient, but with your diagnosis that wouldn't be an issue.
There is a new hospital like that in Utah as well. IMO all patients with energy limiting issues and those with orthostatic intolerance should be given this option instead of ping pong.
Every doctor visit costs me 2+ weeks of my life because of the disabling PEM (mine is so severe I can lose my ability to talk and eat at times). Doctors do not understand this nor do they care. It's also hella expensive this specialist ping ping, especially since I get no care for my efforts.
Speaking of which you may know know what that is. There is an excellent short videos series on youtube aimed at educating health care providers about PEM search "Batman Horne PEM" and you'll find it if you are interested. :)
You area kind soul. Just thought I'd mention that.
I'll check that out for sure! Specialist ping pong gets very expensive! Which hospital in Utah does that same type of care?
Metrodora. clinic. https://www.metrodora.co/ They cover so many over looked and co-morbid conditions. If they were closer I'd have already gone there.
I'll check them out. I no longer practice medicine thanks to the COVID vaccine but have a lot of friends around the country who can help people out. I'm hoping I can find something for you. The problem with Cleveland is it would be outpatient and require scans which means more copays... She is is a really kind person but it means staying in Cleveland for a while which in my opinion sucks....
"it means staying in Cleveland for a while which in my opinion sucks"
I literally lol'd at this
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I don't know you used to practice medicine (and am very sorry illness has taken that away from you). Makes sense though you seem to follow what I say much better than most people :) Thanks for you input and trying to help.
I am very glad to hear you are feeling better but am sorry for all of your struggles. ❤️🦄
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He was kind of a big dill.
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