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.
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.
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.
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.
i have had an autonomice dysfunction for seven years i am 19 and been very sick i dont really no what to do i have been to the mayo in minnesota. me and my mom have done the dr thing missed all my high school and now im getting married in may he knows all my problems but his mom has been asking me question and it hard to tell my mother in law that you cant have kids and then not have a good answer to tell them so if anyone has any good ideas for a dr to see if i actuallty cant have kids or if i can get my life back please i need help and dont want to live like this anymore
Hi Lizzy, Welcome to our community! You seem to have found an old posting from four years ago and added your question to the bottom of that. This thread is old and what we consider a "dead" thread and we recommend you start your own thread by clicking the "post a question" button at the top of the page. You can just copy/paste the text you posted here, but it will get more visibility and attention that way than if it's buried at the bottom of a dead thread.
Hi I am also in Miami looking for a dysautonomia specialist. I also use a MS specialist at the U of M and he could not help me find a doctor. Wednesday I sent a fax and called yesterday to the cardiac department I thought they would have someone. I was a vanderbuilt patient in 2000 and have had a great Dr in Nj but no longer live there.
Good luck to all of us
I don't know who told you can't have kids. For me it started with my first pregnancy. I was actually unusual yu should feel better when pregnant because of the increased blood supply. Some of the meds can b a problem u need to be watched closely. I have 3 children. Good luck Laurie
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