I hope it will be a short wait for you!
We haven't set one yet. My doc is talking to their doc, and they'll get back to me. I'll let you know as soon as I do. ;-)
How long do you have to wait yet until your appointment date?
Thanks for those. I had already heard about familial dysautonomia and found it interesting, especially since I hail from Ashkenazic Jews. But it turns out that the symptoms don't fit me. It appears to be a much more severe case than what I have.
As you know, I'm waiting to get in to see the Stanford specialist to find out how he'll diagnose me!
Noticing a lot of the links on that medhelp link I gave aren't working. I plan to notify Heiferly of this.
I first participated in a forum on NDRF but it had gone down, and once I started being on this one, I haven't looked to participate on any others. This one used to be more active but has slowed down in recent months.
There is a lot of info that can be found here (skip first link, which doesn't seem to work now):
http://www.medhelp.org/tags/health_page/39830/neurological-disorders/Genetics-Relating-to-Dysautonomias?hp_id=832
You might find this particular link they provide interesting:
ghr.nlm.nih.gov/condition/familial-dysautonomia
Once I learned that autonomic dysfunction existed, and that it tended to fit me like a glove, I started to muse on many of the other abnormalities I lived with. That's when the idea first came to me: what if I've had this since the womb??
This is the first forum for it that in which I've participated. Are there others that you like as well?
Healing hugs...
I think it's possible, if the genetic part of the theory is correct, because genes are there in the womb before birth. Let me know what the Stanford doctor says?
Hi, thanks for your answer.
Yes, I was born with about 3 or 4 abnormalities, and didn't discover most of them until the last 10 years or so. Just more answer to the puzzle....
I spoke to my PCP about whether you could have autonomic dysfunction before you're born. Of course it's not his speciality, but knowing what little he does about fetal development, he said it was possible.
I'm being referred to a specialist a Stanford, and once I finally meet with him, I'm going to ask the same thing. It won't make a difference, of course, but sometimes it's helpful to have answers to mysteries you've lived with.
Healing hugs to you.
P.S. Did you have congenital abnormalities when you were born?
I believe there still isn't a lot known about dysautonomia and I doubt those studying it have ventured into seeing if it is happening in unborn children.
The electrophysiologist who diagnosed me claimed P.O.T.S. was genetic and it tended to come out in about the third decade in life or something like that. I was later told a second cousin of mine had it. And last year, a sibling was diagnosed with it too.
I did have some congenital abnormalities when I was born, but I don't know if there's any connection there.