Autonomic Doctor in Florida

Would anyone know of a "decent" dr. in preferably south Florida dealing with autonomic issues.  I really do not want to travel to Vanderbilt.  Several doctors told me not to waste my time.  In the meantime, I have no autonomic dr to answer my many, many questions.  This is so frustrating, especially since I progress on a regular basis.  I know my symptoms are advanced and need answers.

Thank you so much for any help you can offer.

Cathy

[Mom2four85]

I wish I could be some help; I'm still searching for a doctor who specializes in Dysautonmia here in FL.

The only place I've been referred to is Mayo Clinic in JX, but it's on my out of network benefits and my ded is $12,000 up front ugh!  

I'll be interested in finding out if you get an answer :)

[cathyst]

Hi Lisa-
I suspect we are out of luck.  The dr. at Mayo/Jacksonville doesn't have the best reviews.  Also, he is a neurologist with "interests" in autonomic dysfunction, which mean nothing.  I have seen a few dr.s in my area with "interests" or other patients with autonomic issues and they are really no help at all.  

There is a dr. in Pensacola and I think he has a little center of his own for autonomic dysfunction.   I would love to hear about him.  Maybe I will just give his office a call.  I would hate to drive so far away to find he is like the others.  I need a pro.

The closest Autonomimc Dysfunction Center to us is at Vanderbilt, in Nashville.  I think they have been operating since 1978.  My drs. have told me not to bother going.  I have been told it is good if you are looking for a dx, but once dx'ed they just try different symptom relief med on you to see if they help.

This is such a dilemma.  I fret about this everyday and wonder if I should just call Vanderbilt.  They are out of network for us, which does tip the scales somewhat.

I'll post again if I call the guy in Pensacola.

Good luck!
Cathy

[tonyad]

Actually there is a doctor in Gainesville (Shands) who you could look up.
I will look for his name and number for you.

Also, as a side note....A neuro is not a bad choice to see for Autonomic Dysfunction!

~Tonya

[tonyad]

just wanted to add that, depending on your sx.....you also may want to see a good Cardiologist who can refer you to the appropriate doc if it is not heart related...

Are your symptoms Heart and Blood Pressure related?

~Tonya

[cathyst]

One of my symptoms is heart related, but not sure about the bp - if that makes any sense.  They have identified the nerves leading to my heart are damaged.  I did have to heart attack like symptoms and each time my EKG was really bad.  Had two catherizations and they were clear.  My cardio chalked it up to Autonomic.  Although, he said he has no experience in that department.

I would be interested to hear about the guy from Shands.  My thing is that I want a dr. that lives and breathes autonomic disorders and can really help.  I am filling out the application for Vanderbilt tomorrow.  They have a five day inpatient program to work on nothing but symptoms - and I really need help.

I have an MS specialist (neuro) at the University of Miami.  Unfortunately, she told me that there are no doctors at UM that can help me.  She said that I have to go to Mayo/MN.  Unfortunately,again, they said they cannot help  me.  

I am concerned that I am too far along for help.  I worry so much about how much longer I have to live.  I have progressed at such a fast pace this year.  I cannot imagine getting worse.

Let me know if you come up with anything!
Cathy

[cathyst]

Regarding my BP, I do not have the dizziness and fainting spells.  I have had periods where my heart rate was very high and random dr. appts with very high or low BP.  I have had high BP for many years and take BP meds.

In my application for Vanderbilt, I need to monitor my BP for three days and include the information on my form.  I am so afraid they are going to say that they cannot help me, like Mayo/MN.