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Vanderbilt or Cleveland Clinic for dysautonomia?

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Experiences? Which is best in your opinion? Most importantly, were you helped to function better?

I'm being referred to hospice for evaluation. This is a big deal now folks. I've failed all normal treatments and have been seen by multiple qualified specialists. My docs have asked me time and time again to go to one of these two places for my dysautonomia. My docs say I'm too complex and over their head for any further treatment. I also have a lot of other related and unrelated health problems that add complexity. I live in middle NC and the distance is roughly the same to either place. I really don't have the support or feel that I'm strong enough to make the trip and handle all the testing. I've also heard it may be around 100k not paid for by insurance and you're there a week. I've also heard people have just been re-tested for things they've already been tested for and basically re-diagnosed (or even un-diagnosed). And worst of all, I've heard that after all that nothing was done to actually help them function better in the future. Any positive stories?

So this is the end of the line for me, folks. I either decide based on what I hear positive from the people here or I give up for good. I'm not asking for support in this particular post. I just want to hear opinions and experiences.

Thanks for any help. 

ETA a little more information:

I'm a 63 year old female. Previously very active. Main current problems include: POTS, RSD/CRPS type 1, gastroparesis, Elhers-Danlos syndrome, small fiber neuropathy, polyglandular autoimmune disease type II (including, Addison's disease, thyroiditis, early ovarian failure, celiac, possibly myasthenia gravis and a few others), undifferentiated connective tissue disease.

Current meds: Predisone, hydrocortisone, florinef, synthroid, T3, gabapententin, mestinon. (I've discontinued everything else since I'm not absorbing my meds well.)


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