Pardon my absence from the board lately....it's been a matter of not knowing where one belongs, and just plain exhaustion.

Well, I saw a geneticist, and they are doing the test for familial dysautonomia, because that most closely matches my symptoms, of which the autonomic ones are the most severe and getting worse pretty fast. It's a long shot, since only 50% of my heritage (maternal) could be Ashkenazi, (very possibly so, but this disease is recessive-so they say....) Unless somehow we find those genes in midieval England or the Scandinavian northpole. (I would have sworn it was the fault of my rather tight Scandinavian genes.) My neuro feels it is most likely 'dominant' and therefore it is unidentified. I debating whether a service like 23andMe may be worth the reasonable cost for autosomal analysis. Maybe something funky will show?

And, they found a 'hole' in my heart, which has gotten bigger as I have gotten older....that doesn't help the bradyarrhythmia and atrial fib much....now what to do....to fix or not to fix. Complicate this decision with diastolic dysfunction.... I have decided to get a second opinion because my current cardiology clinic managed to miss a two way shunting hole.

Then add an elevated ANA....cripes.

<<Has been my new home lately.

Gee Wizzz, Cy! When it rains it pours
I can't even pronounce most of those medical terms!

I'm glad you are going for another opinion. Hopefully this will get things put in a perspective of sorts.

Please don't hide in that paper sack too long!
I for one miss seeing your posts

Rae

Hi Cyclelops,
I have been on an Apple Ipad and unable to post replies to threads. Finally today on a notebook.

I have no medical background, but after seeing 4 neuros and having more scans than a lab rat including full autonomic testing, and all the nerve conduction studies and thousands and thousands of dollars spent. The answer to me was the same. Take Beta Blockers & painkillers.

I could go see more doctors and treatment would probably not change. I would tell you not to waste your money, but I am in the same boat. I still don't know what the heck I have. And that is difficult to live with. Wish you luck in whatever you decide.