Sylvie33 Posted March 14, 2016 Report Share Posted March 14, 2016 Dear folks, I've begun the process to go to the Cleveland Clinic. I'm searching for additional testing and a comprehensive treatment plan addressing all my symptoms. I have many dysautonomic symptoms, sensory neuropathy, depression, and perhaps some characteristics of Ehlers Danlos Syndrome. All my dysautonomic symptoms began with a wave of anaphylaxis and depression (no one I've seen so far has any ideas about this: but it's why I suspect MCAS). It's been a long haul getting diagnosed...but I have been tested and have positive skin biopsies for PN, a profound drop in BP with a TTT, and a DX of neurocardiogenic syncope and POTS. It's amazing no one can test for MCAS in NYC (Maitland is no longer taking patients) and I simply cannot find a communicative neurologist. I've been really disabled for a year now. I would so appreciate hearing from people here with the disorders I've listed and those who have experience with centers...I'd appreciate advice about the Cleveland Clinic and any alternatives. Mostly I'd like to know if visiting a comprehensive center resulted in an effective treatment plan for you. Thanks so much for your consideration and advice.... Sylvie Quote Link to comment Share on other sites More sharing options...
TCP Posted March 15, 2016 Report Share Posted March 15, 2016 You sound pretty similar to me. I am 55 and only got a diagnosis of EDS and POTS this last couple of years and that's only because I did my own research and pushed for a diagnosis. I haven't been able to pursue a proper diagnosis of my neuropathic pain as the neurologists aren't interested. It takes on average 10 years to get a dx for MCAS. I am pretty sure my own doctors won't beleive in it if I suggest it to them, I am however writing to them about my research and steps to alleviate the issue with diet and supplementation and will ask for it to go on my medical file. I don't know about the situation in the US, but I think it is a tricky one to diagnose. Good luck! Quote Link to comment Share on other sites More sharing options...
Sylvie33 Posted March 16, 2016 Author Report Share Posted March 16, 2016 Yes TCP, We apparently have similar stories. CC does test for MCAS. ...but I have to apply and be accepted to be seen by them....just learned this today. I was surprised, at first, not to see people weighing in here, but I just found a 2013 thread...lots of info. Thanks for your observation! Sylvie Quote Link to comment Share on other sites More sharing options...
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