Pots And Autonomic Neuropathy

[ken870]

i thought i would let you all know that i went to my cardiologist today and when he stood me up my heart rate went to 254 so he rushed me to the er and did a lot of bloodwork and tests and when all the results came back i had finally after six years got a certain diagnosis of severe pots and severe autonomic neuropathy.

[Megan]

congrats on a diagnosis! (although that's not a fun way to get one)

Meg

[Ernie]

Hi,

Wow, that's high HR. You must have felt crappy.

[ken870]

i do feel crappy and i cant seem to find a doctor i was told when i was released from the er friday that a pots doctor would call me to get an appointment today but i have waiting all day today and have not received a call from him.

[ken870]

i thought i would give you all a update my pots doctor called tuesday and i will see him friday at 10 am so hopefully he will give me something for my pots because nobody has given me anything for it in six years.

[Megan]

Good luck!

Meg

[ken870]

what type of medicines do cardiologists give for pots and what treatments do they have.

[ajw4790]

Hi!

Good luck with the appmt! Congrats on the diagnosis! Wow, that is a high HR! I would really feel awful at that point!

For med info etc. see DINET's website and click on the what helps to see the meds that can help. Also, you can search through the forum to see peoples personal experiences. It is trial and error and everyone really is different in regards to what works.

[Rachel]

I'm glad you've been able to get a diagnosis and an appointment with a cardiologist. I hope the appointment goes well and that you and your doctor can find a good treatment plan.

Rachel

[ken870]

i went to doctor dan dan today and i dont beleive it he said that pots and autonomic neuropathy was out of his field of medical knowledge and why was i sent to him for it he also said that either i go back to the neuroligst at emory or that i go to vanderbilt does anybody have any suggestion on what i shoulddo go to vanderbilt or go to the neuroligst.

[juliegee]

Sorry it wasn't a better visit. My neurologist had heard of POTS, but had no idea of how to treat it. If your neurologist is at Emory, he may be better. Call the receptionist and ask if Dr. X regularly treats postural orthostatic tachycardia with autonomic neuropathy. If not, I would guess Vanderbilt.

Best of luck-

Julie

[firewatcher]

Ken,

To get to Vanderbilt, your Doctor has to refer you to their outpatient program (either your Neurologist, Cardiologist or Primary Doc.) There is a waiting list, it took me six months to get my appointment and that was with two doctors pressing them. Your case may be so severe that you can get in earlier. Good luck!

[Sunfish]

sorry to hear about your appointment. i'm sure it was frustrating & disappointing after having your hopes up.

re: vanderbilt, firewatcher's info may be correct for outpatient appointments at vandy but another option is to go there as a research patient. depending on several different factors, including a=of course whether or not you are in fact accepted into one of their research studies, this may be a way to get in to see them sooner. it's a bigger time commitment but here's the link with additional information, including the application & accompanying instructions:http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4779

if you do a search on vanderbilt & research or anything else of the sort you are certain to find a plethera of discussions about vanderbilt including those who have been there as outpatients or as research patients, which is generally inpatient, at least initially.

hope this helps,

melissa

[firewatcher]

Ken,

I was initially rejected by Vandy's research department because I had so many other things going on (endocrine issues.) However, they called me back and told me how to get an outpatient appointment. I also have a friend whose son is "classic POTS," who tried to get an outpatient without a doctor's backing and they were told that it would be a year . I don't know if they give priority to severity of symptoms or doctor's insistence, but get your cardiologist (or whomever did your tilt-table test) to write you a letter or even better, call Vandy for you to get the appointment. There is a new doc at Emory (there is a previous thread about it) coming up from Florida (I think) with a great deal of experience with ANS dysfunction, maybe you could see that doc?

[Rachel]

I'm so sorry that your appointment went badly. Wow. I'm shocked. That's not what I've heard about that doctor before at all. I hope you can find a doctor who is able to treat your POTS.

Rachel