Also

[camtcb]

Just wondering what everyones story was with these dysautonomia..Is there is a page to view others stories?I need someone who can relateThank you again

[cathyst]

Another thing - it is very hard to identify with many of these posts.  There are so many variations of this disorder, not sure which would apply to me.

[cathyst]

camtcb-
I was dx'ed around three months ago, with a grim prognosis.  My neuro referred me to Mayo and they said they cannot help me.  I got a second opinion from a local neuro.  Initially he said I had to go to Mayo also, but after viewing test results said not to waste my time or money and that I am in the 4% that cannot be helped.  He said he will do what he can do keep me comfortable.  Unfortunately, there are no medications for the worst symptoms.

In the meantime, I could just drop of a heart attack, paralyzed diaphragm or other organ failure.  I am seeing, yet another neuro, this Wednesday at the University of Miami.  He is the one that did my initial nerve conduction test, but not the dr. that ordered it.  

What is your story?  I'll let you know how I make out on Wednesday. I still have a million questions.

Cathy

[camtcb]

thanks for the replies. This website is so big its hard to find everything and gets a little confusing. When were you diagnosed Cathy?

[cathyst]

I forgot to add digestive issues, horrible brain fog and blurry vision, when at my worst.  Also, the heat intolerance is unbearable!

Cathy

[cathyst]

I can tell you the my symptoms are horrible.  I need to be horizontal 95% of the day.  I cannot stand or sit for more than approx. ten minutes.  Severe back pain, drenching sweat, tremors, trouble breathing.  I have small and large autonomic neuropathy, along with the nerves going to my heart.  I will be checking out the above site also.

I recently purchased a power wheel chair that tilts and the legs lift.  W/O it, I wouldn't be able to go anywhere, although I am fine walking from room to room in my house.

My dr. said that I am in the 4% that cannot be  helped and he will just try to keep me comfortable - not what I wanted to hear.

Good luck, and looking forward to hearing your symptoms.  Hopefully, they aren't too bad.

Cathy

[Heiferly]

You are welcome to read through former posts in our community.  Many of the posts contain descriptions of people's symptoms, test results, treatments, etc.  

A collection of some of our more relevant/memorable discussions has been cataloged here:

http://www.medhelp.org/health_pages/Neurological-Disorders/Conversational-Links---Dysautonomia-Community/show/903?cid=196

If you click on "Members" at the top right of our community, you can link to individual members' pages.  Some members have very limited information on their profile pages where others have much more extensive profiles.  You can read through a member's past posts from his/her profile page, view pictures, see any trackers/journals that have been posted as public, etc.  I'll offer myself up as a guinea pig to give you an idea of a profile page with more than a little information, but I'm sure you can find others:

http://www.medhelp.org/personal_pages/user/612876?personal_page_id=53529