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Who Is Your Primary Pots Doc?


What kind of doctor manages your POTS symptoms and medications?  

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I haven't found one doctor yet who knows what to do. The cardio did all the testing then prescribes a bb that I don't tolerate, and supposed to go back in a year. Well, I can't keep letting one year go by after another! I have an endo that has tested the possible endocrine reasons, but when all is somewhat normal, they just drop the issue. An internal medicine doctor just looks at all my routine labs and says fine. The only doctor that has actually cared was my new female gyn recently. She just kept saying, "that just isn't right--you should not have to live with that!" I could have kissed her feet for acknowledging(?) that I have a serious problem! She then made me an appt. with a neuro(local), so her intentions are VERY good, I just am not so sure some local neuro is going to help. Oh yea, he's going to want to do the usual testing so he can say he did something, but i would be shocked if he wanted to actually think outside the box. But, who knows.

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Guest tearose

My local PCP helps me manage and maintain myself. If he/we can't figure something out we call out to the Wizard of Oz...the ANS neurologist at Mayo MN that helped me find a treatment plan that gave me my life back! The electrophysiologist and urologist at Mayo are also top notch and I am honored to have them on my "team".

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I have a team of docs who are willing to learn about ANS stuff with me, but only one of them (cardio) has a working knowledge of what to do with it. I have a GP, GYN, GI, and allergist who are supportive but "don't know enough about it to really help" me.

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I have a WONDERFUL TEAM.I'm very BLESSED ~

pc

cardio leader

neuro

fine tunes

gastro

plummy

rhummy

allergy/mast cell

gyn

spec eye docs

infusion team

in home care ot, pt, nurse, homemaker

had endo he moved

pain care spec.

othro. doc

Mito neuro

nutritionist

hematologist

bellamia~*

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My POTS team consists of:

Neurovascular medicine (leader)

Cardiologist (made the diagnosis, and initial treatment then referred to neurovascular)

General Practitioner

I also see / have seen:

Uro-gynaecologist

Immunologist

Gastroenterologist (first appointment next week)

ENT Surgeon

Electrophysiology Cardiologist (discharged)

Rheumatologist (discharged)

Gynaecologist (discharged)

Othopaedic surgeon (discharged)

Dermatologist (discharged)

Like Nina - I think I am the real leader of my team. My poor GP ends up seeing me regularly and I see members of my cardio and neuro teams every 6 months.

Flop

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I haven't found one doctor yet who knows what to do. The cardio did all the testing then prescribes a bb that I don't tolerate, and supposed to go back in a year. Well, I can't keep letting one year go by after another! I have an endo that has tested the possible endocrine reasons, but when all is somewhat normal, they just drop the issue. An internal medicine doctor just looks at all my routine labs and says fine. The only doctor that has actually cared was my new female gyn recently. She just kept saying, "that just isn't right--you should not have to live with that!" I could have kissed her feet for acknowledging(?) that I have a serious problem! She then made me an appt. with a neuro(local), so her intentions are VERY good, I just am not so sure some local neuro is going to help. Oh yea, he's going to want to do the usual testing so he can say he did something, but i would be shocked if he wanted to actually think outside the box. But, who knows.

This made me LOL, because the doctor I saw when I lived in Seattle about everything was a OB/GYN, that I started seeing based on recommendation from a friend. Took her a while to get out of the habit of trying to put me in stirrups :), but other than that she was a great doctor who really knew her stuff about POTS, mainly b/c she had no problem reading all the research material I gave her.

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Oops. I clicked 'team' b/c I'm always seeing more than one doc, but I'm not sure that's accurate since team seems to apply working together, when they all want to try and boss me around individually w/o consulting with anyone else I'm seeing.

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I have an endo that has tested the possible endocrine reasons, but when all is somewhat normal, they just drop the issue. An internal medicine doctor just looks at all my routine labs and says fine.

This is why you should always get copies of your lab work! I don't know how many times I've caught things completely abnormal and was told by a nurse everything was "fine" or "good so far".

Lab ranges are supposed to be a subsection of the population. The problem with this is that sick people (not healthy people) are getting these labs done! Because of this, these lab ranges are getting larger and larger in either direction including more and more sick people.

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Believe it or not, my main doctor is an infectious disease doctor, but I also have several endos, an internal medicine doctor, a heart doc, now a cancer doctor, an immunologist, looking but need a gastro and usually have one. Think those are the main ones.

Linda

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currently being managed by a cardio., but because he is so far away I am considering trying to get my internal med doc to manage me unless I have more problems. He had never heard of pots, so next time I go I am going to take him an overview of pots or asked if he has looked it up. I am hoping with the notes the cardio sends him, maybe he will understand it, but I know thats being hopeful.

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My main POTS doc is Dr. Grubb, who is an electrophysiologist. My primary care doc is awesome at keeping all my docs, and all my meds, straight. I also have a couple of neurologists, a gastroenterologist, an OB/GYN, and home health care nurses. So definitely a team, nearly an army!

Sandy

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  • 1 year later...

My lead Dr is a cardio electrophysiologist who specializes in autonomic dysfunction....my go between doc is an internist/cardiologist/oncologist and of course I have a regular GP who handles everything else not related to POTS/Dysautonomia or mast cell issues :) but it is me that keeps them all on the same page lol!

Bren

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My main doctor for my dysautonomia is part of the team lead by Dr. Watson (cardiologist) of the Autonomic Disorders/ Mitral Valve Prolapse Center of Alabama in Birmingham. I go to Dr. Phillips; she is part of the team, and did the testing and ordered my meds, along with my internist in Huntsville, AL. Dr. Strickland. I have seen a plethora of Doctors, First an ENT, Dr. Pappas Jr., who knew I had autonomic vertigo, neurologist, Dr. John Riser, and Dr. Adams for sleep apnea, all in Birmingham. I have a Gastoenterologist Dr. Campbell in Huntsville, and GYN, Dr. Miller, too. My internist and GYN are very helpful. They always wanted to help me get to the root of my problem...although until I went to Birmingham, it didn't happen. Funny thing is, I was the one who 13 years ago went to a Cardiologist, Rheumatologist, Neurologist and ENT in Huntsville, trying to figure out what was wrong with me. I think they thought I was healthy and crazy :blink: So at least I am affirmed that I was stepping in the right direction. That was within the 13 years before I got really bad....then I took the bull by the horns, and knew I had to go to Birmingham, and God did the rest!! :)

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I don't know if this is considered a team but I clicked team. Mainly because I have 2 pediatric cardiolgoist (I know a lil weird) lol..... My first one is the one who initially diagnosed me but as I became worse he referred me to another one who manages it at Duke Childrens. So basically the one who initially diagnosed me oversees my POTS and the other one manges it. haha kinda complicated I know. I also have a therapist who is amazing! I also has seen before:

Pediatric Gastro

Pediatric Neuro

Sleep Doctor

Nutritionist

Back Doctor

Pediatric Integrative Doctor

ENT

Physical Therapist

I also have a:

Infusion Team

Therapist

Pediatrician

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my obgyn told me to see my family dr., who sent me to the cardiologist who said, "oh it's POTS, you have POTS. i'm 99% sure, we'll do the test tomorrow to confirm." Its all very new, but i guess my cardio is the leader on the POTS front, then my OBGYN for my pregnancy, and then my GP to direct me to who i need to see next.

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A bit complicated - I have a neurologist who does pretty much all the treatment, my primary care doc who is just getting the hang of things but did a lot of the initial workups (Holter, bloodwork, etc), and a cardiac electrophysiologist who thinks I have some ANS symptoms but that it's mostly atrial tachycardia (she's wrong, but whatever). Since it's just the first year, the cardio hasn't talked with the neuro yet (I haven't had my cardiac followup yet), so we'll see what happens. Probably will add a new rheumatologist into the mix if the genetic counseling comes out the way I expect.

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  • 1 year later...

My main doc is my pots doc. He's a vascular consultant/diagnostician. I was sent to him by my allergist/pulminologist nearly 8 years ago and he was the one that diagnosed me with this illness with the awfully long name of Postural Orthostatic Tachycardia Syndrome. When I see my other specialists they all send him a copy of the report they send to my gp.

blue

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My local PCP helps me manage and maintain myself. If he/we can't figure something out we call out to the Wizard of Oz...the ANS neurologist at Mayo MN that helped me find a treatment plan that gave me my life back! The electrophysiologist and urologist at Mayo are also top notch and I am honored to have them on my "team".

Who is the wizard of Oz at Mayo? I would love an autonomic neurologist but just got back from Mayo MN and the neuro I saw was unhelpful. Two questions. Does Mayo Az have autonomic cardiac and neurologist docs? If so, who do you suggest? If mayo MN is the only ones whom are adequately qualified to treat PoTs....who do you suggest? I also saw a doc on the list in Portland. Can anyone comment on her? Very close to Portland..

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