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Thinking of cancelling cardio app't


JLB
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I have that app't with the cardiologist coming up (referral from the neuro who isn't up-to-speed on dysautonomia) - I already know I have a "murmur" and a "slight valve problem" from (too many) past exams, and the last cardio I went to, 4 years ago, told me I'm just nervous and need to relax.

I won't take any meds, because of the physical effects, and I don't want to spend a few hundred dollars to be told again I'm nervous - can anyone think of a good reason for me to go? Because I'm really tired of doctors and ERs and specialists, and I never got any help anyway. Not even a diagnosis.

Sorry for the bitter tone - it's been a rough week, physically. Sometimes, I think I'd feel 50% better just to hear a doctor say, "What's wrong with you is a disorder called dysautonomia."

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What kind of cardiologist are you seeing? If this doctor is not an electrophysiologist then, per my experience, you could be wasting your time. I have seen several cardiologists over the years none of whom even seemed to have the slightest notion of POTS/autonomic dysfunction. My current specialist, though, is an electrophysiologist and he is great.

Have you had a tilt table test?

There are still things you can do to improve your symptoms, even if you refuse to try new medications, but most doctors are going to highly recommend medications. And, not without good reason--meds do help most people to become more functional/improve/recover.

Good luck, Katherine

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Thanks, Katherine. He isn't an electrophysiologist, and as I've already seen the guy who knows the most about it in this area, I'm wondering what the point is - I just don't think I can handle another pat on the head and a prescription for a sedative. (Not because I'm opposed as a rule to meds, but because my system really can't tolerate them well. I haven't taken one yet that doesn't make my symptoms worse.)

I think I'll decide on Monday morning. Just seems like a waste of time. I need to stop chasing down a dx and focus on taking care of myself.

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JLB, I can't tell from your post whether you've had any autonomic nervous system tests yet, the tilt table test being the most important of these. Your cardiologist--even one who is not an electrophysiologist (mine isn't) is able to prescribe this and should be able to interpret the results. It IS helpful to get a POTS diagnosis (or diagnosis of other forms of dysautonomia) for sure--if only so you can get people to stop patting you on the head! My autonomic tests were ordered by a cardiologist when I wanted to finally track down why my heart rate was so incredibly high all the time. After ruling out cardiac problems, we looked at dysautonomia.

Anyway, good luck with your decision,

merrill

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JLB, where are you located? Can you get a referral to an electrophysiologist? Or go see one on your own? I've read your posts about the sympathetic/parasympathetic nervous systems.....are you in the medical field?

I can understand that getting the diagnosis can give some peace of mind. But it's far from an end point. I think that's when the meds really begin.....and the door opens to another journey.

Best of luck in your decision and your search.

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Thanks, HW.

Wow, I've been off here for almost a week now - rough few days here.

To catch up: I'm in New Hampshire. I've had the basic neuro screenings, but the problem in my getting medical care seems twofold to me: First, 15 years of anxiety dx's follow me to every doctor, and I really believe they are influenced by that... because second, there really doesn't seem to be an MD around here who knows much about dysautonomia.

I'm not in the medical field (but that struck me as a compliment - thanks), but I have been researching and studying everything I can get my hands on about the ANS and POTS/Dysautonomia since I crashed severely in late June.

BTW, I decided to call the cardiologist's office and ask what his experience with POTS is, and make my decision after that.

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