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DSM3KIDZ

How Many People Just See A General Doc For Pots/ Autonomic Dysfunction?

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As I've wrote in other posts my doc is really not helping or even caring if I'm alive. She was great at diagnostic but horrible at treatment. She belittles me everytime I have a side effect from a med. This illness is all about finding the right combo of meds for the individual and she sees us as a group and what works on one works on "all". I literally panic the night before my appointment because she is so cold. she recently make another of my POTsy friend cry. My point here is she is the only specialist in my insurance and there is one other out of network but I can't get approval.

so does anyone just see a general doc like internal medicine or family doctor for their POTS treatments? and if so how do they know how to treat you if they don't know about POTS? I can only imagine a dotor telling me to go take a hike if I asked them to use their "valuable" time to learn about my illness.

I have the autonomic neuropathy causing all my problems (Gastroparesis, POTS & Migraines) so I don't know if just seeing a cardiologist would be the answer? Maybe?

I'm sure their are great docs out there but I really believe to find one that has a little compassion is like searching for a needle in a haystack.

Does anyone have any advise on this topic?

Thanks in advance

Dayna

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ANY doctor who is interested in your care could treat you for POTS. My gp does most of my treatment, supplemented by my Neuro, Gastro, Pain Mangement, and occasionally, an EP cardio consult.

Nina

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We see a POTS specialist, and he advises our local docs. He's covered but we incur all costs associated with travel, lodging, etc. We'd see him even if we weren't covered as we believe no price is too much for good health/medical care.

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I would see a specialist at least a Electrophysiologist. Some one who has seen or at least read about it before and understands how to work the meds. Based on reading here it appears to be as much art as science at this point. Just a humble opinion. If your family doc was willing to do the research and put time in to understand the disease and have a "go to guy" when he is in over his head I would say that the family doc is fine but.. that does not seem to be the case.

Goodluck

Dave

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This is such a tough call. I see an internist who admits he doesn't know anything about POTS, but he'll read things that I bring in. He'll also order any test I ask for without putting up any objections. The problem is, I'm not always sure that me directing my care (by getting ideas from my own research) is such a great thing. Because essentially, while I know how I feel, I don't really know what I'm doing.

On the other hand, the neurologist I'm seeing for my compression in my cervical spine, told me yesterday, "All you people with POTS are going to eventually find out that all you have is PSVT and that there is no neurological relationship at all." It was an incredibly arrogant statement from someone who admits that he has only seen two other POTS patients in the past 30 years, and treated neither.

My response was, "Wow, that's amazing, since all the electrophysiologists I've seen have never found a single thing but sinus tachycardia on all the event monitor, holter monitor readings, and EKGs I've had." He said, 'You mean they've captured the arrythmia?" I said, "It's not really tricky to capture it, it happens every time I stand up! But, I'll have to let my EP know that even though he's the expert, he's been misdiagnosing people all along! I'm sure he'll be relieved." His response was a big smile and he said, "You know what? You're funny!" (thank heavens my co-payment was only $20!)

My electrophysiologist is fantastic, but lives 5 hours away and doesn't know everything there is to know as he is a general arrythmia specialist and is very talented when it comes to ablations (which of course, I'm not a candidate for).

I think sometimes I should go somewhere that specializes in dysautonomia even though I do really well on just a beta blocker. I have a fear that my POTS is secondary and that I really should be finding out the cause. Then I have an appt. like yesterday, and I get really, really discouraged.

I hope you find the right person to treat you. Nobody should have to dread a doctor's appt. because of how the doc makes you feel!

Carolyn

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I'm the same as BEE, my cardiologist handles everything. He's treated POTS before, but admits that my case is "super specialized"...whatever that means.

I had to search nearly a year to find a GP that I was comfortable with. If you're not satisfied with your doctor now, just keep switching until you find someone you like. It take a bit of extra effort and money, but in the end you'll benefit so much from having someone who like and trust treating you :)

Best of luck!

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I see specialists for specific symptoms (EP cardio, neuro, gastro...) but my internal medicine doc is my main doctor. She's really awesome! Today she even called just to check in and see how things were going since she hadn't heard from me yet this week. I much rather have a doctor that is friendly, supportive, and helpful than an "expert" in the field. I think it's also important to have a doctor that will admit when they just don't know what to do and ask someone else for a consult. Sometimes doctors can even just talk to each other rather than having to deal with getting to an appointment, insurance, etc. I'd focus on finding a doctor that you feel comfortable with and is willing to put in a little extra work. They definitely exist!

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Dayna -

I can understand your concern- no easy answers here. At least acknowledge your gut feelings on this, even if you stay with this Doctor. Your instincts can tell when a doctor (or their whole practice) is stressed out. If the doctor is often unpleasant, you feel like you are always hurried through the visits, then suspect that the clinic is "unhealthy". Going to an unhealthy clinic is not healthy. Whatever the cause - the doctor has personal problems, low reimbursement rates, doesn't like you, etc - you are going to feel stressed out more by trying to get more out of a doctor that doesn't have much to give.

FWIW,

Dano

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Hi Dayna,

My regular physician doesn't have a clue about IST/POTS so I was referred to an Electrophysiologist and for all my yucky symptoms related to it, my EP works with me. My regular physician's attitude on it is to just "add more salt to my diet and drink extra liquids and then I should feel just fine" was his words! Find a physician that is willing to refer you to an EP as most specialist require a referral and so do many insurance plans.

Hope you can find a caring and knowledgeable doctor.

Tammy

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I see an internal med doc and a neurologist. I'm mad at the internal med doc today. Whenever I call, he seems to come back with the wierdest of answers. I just started a birthcontrol pill, but stopped it because of shortness of breath and increased dizziness. The RX leaflet SAYS to call if you have those symptoms. His answer was " oh, okay- here is another BC pill, if you want to try this one...!!!" Yeah! let's ADD to the scary symptoms!!

So- I say thank heavens for my Neurologist. Sometimes general docs can be so strango!! I would get a specialist if you can- and- I would not put up with the attitude that your doctor seems to have. I'm just glad I have my go-to guy!!

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I see my famiy doctor for treatment of POTS, I also see a doctor in Cleveland, and then I also have my local EP doctor, but they all work with my family doctor. Like my EP wanted me to start Procrit. So he set it up with my family doctor. They work togeher.

I am lucky to have a great family doctor who turly cares about me getting better. I hope that one day happens! :)

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