Need Dr that treats POTS in South Florida

[pepito6]

Does anyone know of a good Dr.that treats dysautonomia (POTS) in South Florida??
I have been to the Cleveland clinic neurology dept with no results.  Maybe I should check their cardiology dept.  PLease let me know if you know of any.
Thanks,

[cathyst]

I am in S. Florida also.  Most of my drs. areat the Cleveland Clinic, for convenience.  I have seen Dr. Salanga (neuro) off and on over the past five years - I kick myself everytimie I waste a co-pay on him.  He is so arrogant and insulting.  My cardiologist at the CC is Dr. Fromkin.  I see him for other cardiac issues. He made it crystal clear to me, not to depend on him for help in the autonomic department.

I see an MS specialist in the neuro dept at UM.  She diagnosied my POTS (sort of) and said that there is no one at UM that can help me.  My daughter-in-law is a nurse manager at Holy Cross.  They have a certain type of cardiologist that might be able to help us.  I have to get the name from her and I'll post it on this thread.  I think his title begins with electo-something or other.  I just came back from Vanderbilt because there seems to be no one down here that can help.  Vanderbilt, changed my dx and spit me out. (from autonomic lg and sm fiber neuropathy to POTS)  I am not sure which dx to believe.  We really, really need a bright, informed autonomic specialist down here.  My frustration is through the roof.

I'll be watching this thread to see if anyone comes up with a good doctor.
Cathy

[SouthernMaggie]

I have heard of Dr. Charles Randy Thompson in Florida. I spoke with someone in his office last month and Dr. Thompson actually has dysautonomia himself so I would think he'd be a very understanding doctor.

I don't know him and have never met him. His office staff was nice. We were going to go see him but my daughter's specialist may have pinpointed what's been causing her tremors so we're holding off on going to see him.

Here's a link about him
http://www.dinet.org/08issue1/win08news2.htm

I hope this helps.

[cathyst]

I have heard of him, I think he is up in Pensicola.  thanks for the link, I'll check and see if there is anything I didn't already know about him.  He is always on my short list, after I get over swearing off of any more doctor visits.

Thanks-
Cathy

[pepito6]

Thank you for replying . I also went to see Dr.Salanga, at the Cliveland Clinic and I agree , it was a waste of my time. I am currently seeing a cardiologyst that seems to know about this, his name is Dr. Chizner in Broward General in Ft Lauderdale, he has been treating me with Toprol and salt tablets and gatoraide  and I am feeling a little better .
There is another Dr, at UM , that I will be going to go to in a couple of weeks, his name is Dr.David Adams, he was recommended to me by another neuro at UM. I will let you know how it goes with him and if he is worth going to.
Thanks,
Maritza

[cathyst]

Hi Maritza-
I can't wait to hear how you make out with the dr. at UM.  My neuro at UM, Dr. Janice Maldonado, told me that there wasn't anyone that could help me there.  Is this dr. a cardiologist? I can tell you that Dr. Sharma, from UM is a huge waste of time and co-pay.  He was horrible and misdiagnosed me, after doing the EMG/nerve conduction test.

I am really upset that I left Vanderbilt w/o the adequate time to think of questions to ask.  Now I have a million.  I have noticed when I e-mail drs. with questions, they only respond to one in their reply - so frustrating.

Would you consider Dr. Adams to be very knowledgable about POTS?  Thank you for the tip on him!
Cathy

[pepito6]

Hi Cathy, DR Adams is a neurologyst that came from New York and is supposed to be very good, I have not seen him yet,  I will let you know how it goes.
Maritza

[Jade1930]

My son sees Dr. Young who is the head Cardiologist Electrophysiologist at UM childrens center and he (Dr. Young) has POTS as well.  I don't know if he sees adults.

[kelly1258]

Hi my name is kelly I put toether a Dysautonomia Association  in South Florida the purpose of getting doctors together for this illness.I have been consulted with and asked to speak to the local Dr.s and Hospitals.  I presently getting website going.  I already have the MD who is specializing in it and is a gatekeeper to get you going.  DO you need adult or child?  Kelly you can contact me directly at ***@****

[eldyrarias]

hi Kelly . My daughter was just diagnosed with POTS and I am also looking for a dr as well my email is : ***@****. your email did not come through. I am so in need of someone to help with this.thank you.

[pepito6]

HI KELLY, THAT IS VERY NICE OF YOU TO BE PUTTING TOGETHER THIS ASSOCIATION IN SOUTH FLORIDA, WE SURE NEED IT.
I NEED A DR. FOR AN ADULT WITH POTS AND CHRONIC  FATIGUE SYNDROME
MARITZA

[tonyad]

   I would suggest first stop (for accuracy) is to see an Electrophysiologist then
between him/her and your cardiologist they will make a plan of attack.

   I too live in Florida.  
Ready for some warmer, dryer, weather  :)

Good Luck,
~Tonya

[LO55]

Does anyone know of anyone in Gainesville who treats POTS?

[tonyad]

Yes, but he is not very good. Very arrogant (sp).
I do however know of a WNDERFUL one in Ocala (only about 25 - 30 min. away.

~Tonya

[LO55]

Hi Tonya,

Can I contact you to ask who the Doctor was here in G'ville? We went to Mayo Jax and had a 10 minute appt with a Cardiologist there, not very happy with him. I wish we could have gotten an appt to see Dr. Cheshire, but he didn't have any openings at the time. Also, it would be worth the drive to Ocala, if you could give me the name. thanks! :)

[nerakaaron]

Hi Tonya,

In Jax, looking for a POTS specialist. Do you have the Gville doc's name?
Thanks!

[schelle7]

Hi,
I have very recently started treatment for what my Dr thinks is POTS. I am not sure exactly how far south you are but the electrophysiologist (electrocardiologist) I go to is Dr. Cossu in Port Charlotte, FL.

[Kavbear]

I am in the Clearwater/ St.Pete area (Central FL) and just got back from the Mayo/ Minn.
and FINALLY have a Dx. of POTS and a few other "common things" that aren't going to be a problem getting treated. and now don't know where to start here.
I was given a starting treatment plan and to call my "main" doctor there in 3 months if after following my plan things did not improve OR things got worse at any point.
I can't afford even yearly trips there, does anyone know of anyone in my area,  or even within several hours drive from me or Daytona (where I have family)?
I see there is one in Pensacola but I might as well fly back to the Mayo.

[tonyad]

  Hey there, and Welcome to the Forum :)
I have the name and number of an Electrophysio in Ocala, only about
2 1/2 hours from ClearWater.

   PM me or send me a note if you want that info.
Sorry for your dx but glad that you have some answers  :0
Take Care,
~Tonya

[lyonsden10]

I just came from my neurologist's office and he wants me to get the testing for this. I'm also in S. Florida. I don't even know what dysautonomia is yet! I have chronic fatigue and other issues, but increasing and severe dizziness, palpitations, orthostatic hypotension, and a few other things that made him recommend testing. I am even on a medical leave from work. So I, too, would like the S. Florida website URL when it is done. Thanks

[matteahmb]

I am a patient of Dr. Thompson's in Pensacola.  He is a wonderful Dr. and frankly gives you great peace of mind since he understands some of the strange systems that can be described with this disease.  Explaining brain fog to someone who has never had it seems impossible sometimes.

The down side is that he can be out of the office due to his condition.  Right now, he is on a medical leave.  I assume he is going to be returning (fingers crossed).  I would hate to have to go back through the doctor's with blank stares.

[Lisala]

I have had a diagnosis of dysautonomia since 1990, where I saw a Cardiologist at UAB in Birmingham, AL.  Dr Lou Dell'Italia.  Not sure if he is still there, but UAB had Dr Coghlan on staff, who did a good bit of research in this area.  I am going through the hoops here in the Panhandle of FL, as I had to change from Toprol XL because of severe resistant major depression.  Who know changing to Verapamil would be such a friggin roller coaster.  Finally got a referral to a cardiologist, so will see if he has a clue.  

I have just learned about Dr Thompson in Pensacola.  Thanks for the info.  HE is next on my list.  I have spent the last 4 weeks with tachycardia 115-168 with no relief...and my internist is CLUELESS!!  and unsympathetic.  They look at you like they think you are a hypochondriac!   We''ll see how the referral goes; may have to go back to Toprol and adjust the psych meds.  Hate to do that b/c I am feeling (mentally) better.

[tbhb2254]

Is there a Doctor who knows about POTS in central Fl? I live in Orlando and am unemployed and no insurance (waiting for the Obama plan to kick in haha). I have a lot of medical problems but I can't get rid of the fog in the head feeling and flue like feeling (over 10yrs now) can't remember what I did today so that messes any job's, you name it I got it. I take 9 med's and I'm sick of all this.   Thanks

[LaLa4]

I am in Miami and have been to about every doctor out there with no luck. Every doctor I come across is so condescending, even with the POTS diagnosis. I can't wait to see the website for S. Florida, when do you think you'll have that up?  
Someone mentioned Dr. Cheshire at Mayo Clinic....I went to him and he did absolutely nothing, total waste of time. I think I'm headed up to the Cleveland Clinic in Ohio, I've given up hope down here :(

[ROWDY1]

JUST TO LET YOU ALL KNOW I FOUND A WONDERFUL DOCTOR IN NAPLES FLORIDA. ( SINAN GURSOY MD) WHO SPENT A TON OF TIME WITH ME AND REALLY EXPLAINED EVERYTHING. I HAD BEEN DIAGNOSED WITH POTS A WHILE AGO BUT I NEVER REALLY UNDERSTOOD UNTIL HE EXPLAINED IT.  ITS AMAZING HOW MANY PEOPLE HAVE HE SAME PROBLEM BUT NOT MANY DOCTORS KNOW ABOUT IT...  

[dani_johnson]

Rowdy1, he's my doc, too. I wouldn't be alive without him. He is sympathetic and understands mechanics. Ruth DuPont is a family doc who also understands. I know this is an old thread, but I wanted to look in here for someone up in North Port whose 7-y-old is dxed. But I saw Gursoy's name - love him. I know he rubs some people the wrong way with his gruff sense of humor, but not me. His office staff has changed a bit and it's all for the better. A few years ago, there was someone in there who just didn't need to be in there answering phones and dealing with patients.

[LO55]

My daughter has POTS and is finally starting to improve with Midodrin. It regulates her blood pressure and she can finally live again!