September 13, 2012 at 9:05 pm #310Dr. DianaKeymaster
Dr. Diana explains what is involved in the diagnosis of dysautonomia. What is a “subclinical” diagnosis? Why a heart rate variability test is not enough! A must see for all spoonies – EDS with dysautonomia, POTS, MS, chronic fatigue, chronic Lyme, fibromyalgia, RA and other autoimmune and neurodegenerative diseases. Articles at http://www.Prettyill.comSeptember 16, 2012 at 8:02 pm #2932BarbParticipant
I just wanted to take the time to say “thanks” for your web site. I’ve been diagnosed with neurocardiogenic syncope since 1998. It’s been bad since 2009 when I was hospitalized 5 or 6 times for 1-2 weeks at a time, and spent a good part of the year in bed. I’m doing better, but it’s still very much up and down. I’m still not allowed to drive, because I can’t go long enough without passing out to get a doctor’s permission! I came across your site doing some searching for “mast cell” because I just recently discovered the term “dysautonomia”, and discovered that NCS falls under that umbrella. I seem to keep hearing the term mast cell as well.
I’m totally fed up with “specialists” who know nothing (traveled from Florida to Cleveland Clinic in Ohio last summer and spent a couple thousand dollars for NOTHING); have determined I will never go to another doctor – will just have to live with this. :/
BUT in doing my own forum-searching the last few weeks, I’m learning a lot. For instance, your mast-cell descriptions possibly answer some questions for me. I have sent an email and your link to my primary care doc (who, thankfully, is an excellent, caring doctor – as well as a friend). I have had years-at-a-time of hives/angioedema, and just last year had an inconclusive bone-marrow biopsy due to elevated eoosinophils. If I understand part of your mast-cell info, this might be something worth looking into????
Anyway, IF I decide to try another doctor, I will certainly know more. I have heard Dr. Randall Thompson in Pensacola is a great Dysautonomia specialist. But, like you, he suffers from it as well, and has only a limited practice and has to cancel frequently due to being ill. :/ I may look into going to him….but would hate to schedule something and have to reschedule after traveling that distance! LOL
Best of luck to you…and thanks for the hope and help!
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