I have had a striking number of symptoms of Dysautonomia this past week. In looking for answers, I stumbled upon the Wikipedia article that says Lyme is one cause.
How is Dysautonomia diagnosed? What specialist will actually diagnose it?
Thanks,
Posted by tailfeathers (Member # 39328) on :
Do a search under 'Dysautonomia' here Razzle.. I know both lax mom and I (sorry I dont' mean to speak for her) saw top dysautonomia specialists. I've had a number of complications in my Lyme tx so have not started that protocol.
In the meantime, here's an excellent site which I used to find my doc and also offers fabulous info:
www.dinet.org Posted by tailfeathers (Member # 39328) on :
A tilt test is usually the method of getting a diagnosis. I have lyme-induced Dysautonomia, which is pretty common. Dr. H lists it as one of his 15 points.
A cardiologist can treat it, or some LLMD's know a lot about it. There are even some Dysautonomia clinics around the country.
Posted by Keebler (Member # 12673) on :
CARDIAC INFO & SUPPORT -
Posted by Dove7 (Member # 39546) on :
Keebler, that article by Laura Wild is great. I think this will help me tell my family better what happens when I have to stand in one place and why I try to pace when in line at a store or the bank. Thanks.
Posted by Keebler (Member # 12673) on :
- Anything that helps others better understand helps us on so many levels.
When we get frustrated, it helps to know that it all makes sense, really. -
Posted by Razzle (Member # 30398) on :
Thanks for the links & info.
Oddly, my blood pressure seems fine, but my body acts like I have the dysautonomia stuff...except I don't actually pass out.
And it mostly affects my heart rate and my gut. Could a person have dysautonomia that only affects the vegas nerve?
And can certain foods trigger dysautonomic symptoms?
Posted by lax mom (Member # 38743) on :
My BP actually goes up when standing.
I saw a local Cardiologist who initially diagnosed me. Then I saw an Neurologist who is an ANS specialist from the dinet website.
Thank God I saw him. He did an EMG and NCS which showed I have polyneuropathy in my arms/legs. I would have never, even known that.
I still have a TTT and EEG to go.
I recommend looking into it.
Posted by Keebler (Member # 12673) on :
- Dysautonomia can mess with ANY function, in various ways for different people, at different times, too. -
Posted by Razzle (Member # 30398) on :
Unfortunately, there are no dysautonomia specialists anywhere near where I live, and I am unable to travel...
More crud for my already over-loaded PCP...ugh. Good thing he likes challenging cases, LOL!
Posted by lax mom (Member # 38743) on :
Does anyone know if dysautonomia can affect body temp?
Razzle: is there anyway you can forward your Dr the youtube of Dr. Blaire Grubb?
Posted by lax mom (Member # 38743) on :
P.S. Razzle: call around and see if any electrophysiologist Cardiologists are familiar with POTS. My Cardiologist knew about it and wasn't on the Dinet list.
Posted by Razzle (Member # 30398) on :
Lax Mom,
Yes, I can give him the link to that video. Thanks for the idea.
I'll see what my primary doc says first, one never knows...but he may know of a dysautonomia expert here who isn't on the doctor list.
![[Roll Eyes]](rolleyes.gif)