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Any Doctors In Maine


jimells
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Two weeks ago I saw a rheumatologist. It was a seven-hour round trip drive to watch the doctor spend 20 minutes typing into his computer. Then he handed me a stack of lab orders and practically pushed me out the door. The physical exam lasted about two minutes: he watched me raise my arms. I had to check to see if I was in a doctor's office or on an assembly line. Still not sure which one it was.

So anyway I finally talked to the doctor's assistant today. None of the tests show anything. I was told to see a neurologist -- it was a neuro who sent me to the rheumatologist ("I can't help you ... I don't know who can.") The assistant also said something about possible fibromyalgia, but the doctor has no intention of following up on this. Isn't fibro supposed to be one of 'their diseases'? Did he shove me out the door when he noticed I'm on Mainecare and therefore won't get much money from the state?

Right from the beginning, before I went for the appointment I told the office staff I thought I had POTS. The doctor said he doesn't know about POTS, it's not one of his diseases, and made it clear he has no intention of finding out what it is, or if I have it.

The assistant also suggested I see an endocrinologist. Do any of them know anthing about POTS?

Is there even one doctor in the entire state of Maine that has heard of POTS??

Going out of state is not an option, unless I can find an institution that takes charity cases(yeah, right). I tried that route a year ago at the UMass hospital in Worcester Mass. The neuro might have actually tried to help me, but the institution made it impossible for me to follow up. I spent a year fighting with those people, even though I made it clear from the beginning that I am nearly destitute from the disease. I live on food stamps and $300 per month, from a part time job. I've been fighting with the Disability Denial Service for over three years.

I tell every doctor I see that I think I have POTS, and to please confirm the diagnosis or, if I don't have it, what is my problem. They never evaluate for POTS, and they never really look very hard to find the problem. Must be all in my head.

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Maybe these folks would know of someone?

http://www.abilitymaine.org/resource/guides/cfids.html#mesup

Thankyou for the link. I will definitely study that info.

I just asked my dr to humor me and check my heart rate when I was laying down and then after I stood up for a while. I didn't mention POTS or dysautonomia or anything, though I thought I had developed POTS.

I like your approach. I realize of course how easy it is to damage their delicate egos. It's a shame, really, that an informed patient is perceived as a threat. But when all they want to do is try to sell me colonoscopies and PSA tests while ignoring the fact that my life is wrecked, well, it's hard to bite my tongue.

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Hi Joe-

I like Crow's approach too. Let them think THEY discovered it :D Ego attachment may lead you in a more helpful direction...

We have a member, Cardiactec, who is intermittently active, that lives in ME. She is very knowledgeable (and kind) and may be able to point you in the right direction. Maybe PM her.

I lived in Topsham (near Brunswick) for 5 years in the late 80's. LOVED it! Where abouts are you? Bet it's wicked cold now :P

Julie

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I don't like that approach at all.

And I agree that a colonoscopy or a PSA test won't do you a bit of good (if you can even tolerate a colonoscopy) when they're not diagnosing the disease from which you've actually obviously been suffering for years (obvious doesn't help when it's unbeknownst to anyone but us).

Ask the doctor if your pulse or blood pressure (or whatever he/she can "measure") are "normal." Tell the doctor you don't think it's normal and that you feel awful when you get those measurements. Tell the doctor you need a referral to someone who can treat you appropriately for these abnormalities. Do have a list of doctors you think might be able to help available (call first and ask about whether they treat people with what you have) ...and have another list for when you go in just in case the doctor you thought would help doesn't ...

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