DESPERADO

[Petey47]

Can anyone out there give me a name of a doctor who specializes in dysautonomia on the east coast preferably near NC I can see before the regular doctors kill me here?

[AireScottie]

Well doesn't that just ****!  Any chance of COBRA or Medicaid?  No need to respond, just wanted to remind you in case you hadn't thought of it.

[Petey47]

Well, for now I'm just gonna have to grin and bare the flare up because we just lost our health insurance!  Today was a pretty good day.  Back to the pool with balance exercises.  The water has saved my life.  Despite the doctors here trying to kill me!

I love this site.  I am so grateful to have found it and the posters here!  You've all been incredibly helpful with your sharing information!  Thanks to you all.

[wonderwoman3]

Not overly close, but what about Vanderbilt in Tennessee?  They just got another grant for study.  Sorry, I know being a guinea pig is not fun...

[khearts2]

Some forms of Dysautonomia improve with age.  You can even grow out of secondary Dysautonomias.  Other forms of Dysautonomia actually worsen with age.

[AireScottie]

Well, it's not close to you, but the Syncope Clinic at Cleveland Clinic is fabulous and the wait isn't two years.  Might be worth the trip.  Their info is in the Health pages at the upper right of this forum.  Have you done any reading on peripheral/small fiber neuropathy?  There are a lot of things that can destroy these autonomic nerves, and it's possible you have a treatable underlying cause like autoimmune in addition to the virus you just had.  

[Petey47]

I have been to the Dysautonomic Center in the early 80's in Birmingham, Alabama.  This was before they knew very much about the disease.  I'm on a waiting list to go to UNC to see a Dr. Caroline Klein.   The list is two years long!  That *****.

I know I have dysautonomia and have dealt with it since my twenties.  Recently I got a killer virus that attacked my autonomic nervous system.  I could NOT work for 2 months.  I'm coming around now.  They thought I had a stroke but I really don't have any confidence in the doctors here because they haven't a CLUE what this disorder is.

I take a Beta-Blocker for the tachycardia.  It works pretty well.  I take Klonopin for the autonomic seizures and passing out.  I take Zoloft to keep from jumping off tall buildings.  I, also, found bio-identical hormones to be very effective for menopause.  I have every single symptom of the disorder.  I deal with them one at a time.  I am a personal trainer so my diet is impecable.  I exercise like a robot.  Exercises like swimming and ballet.  All good for balance.  I stopped sugar and caffeine years ago.  I never smoked or drank to begin with.

Here's the good news.  The severe symptoms you have now will abate with age.  You, however, will get a whole new round of irritating but NOT debilitating symptoms.  I'm getting bettter.  But I couldn't work for two months.  You can live with this.  And the medications I take are a lifesaver.  I, also, get acupuncture to help the nerves stablize during peak times of flare ups.  I hope this helped.

[halbashes]

Have you been to a teaching hospital?  I don't know the names of any specific doctors in NC specializing in Dysautonomia, but teaching hospitals are usually helpful for diagnosis and treatment.  What kinds of symptoms are you dealing with?  Which treatments have you tried so far?  I hope you will soon find a doctor that is able to help you manage your Dysautonomia.