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-   -   Autonomic Testing (https://www.neurotalk.org/peripheral-neuropathy/122985-autonomic-testing.html)

nide44 05-30-2010 06:54 AM

I may be putting the cart before the horse, but I see the winds-a-blowin' that I nmay have to change PCP's. After 10 successful years with this one, alluva sudden I can't get in touch. emails, phone calls- no call back. She only sees patients 1-1/2 to 2 days a week, the rest of the time is research and teaching. Maybe I'm over reacting.
Admittedly it is a HUGE (Johns Hopkins Family Practice) division, and I won't be left in the lurch without a doc, but breaking in a new one & developing a good relationship is a big job and takes quite a while to establish. And shopping around & trying out new ones is exhausting! At age 66, I may not live to see it to fruition ;)

echoes long ago 05-30-2010 12:20 PM

im going on two years now and still not happy with any of the PCP's ive had since.

glenntaj 05-31-2010 05:57 AM

Personally--
 
--I try to avoid primary care physicians as much as possible. It's nto thtat there aren't some good ones out there, but many of us here are such unusual cases by their standards that they are in over their heads with us with little idea how to handle our symptoms. (Not that specialists are necessarily more knowledgable either. I think the best way for most of us to go, if we can, is with clinical practices in tertiary centers or teaching hosptials that also do research and have more possibility of being on the cutting edge.)

I do feel for people who have insurance plans that REQUIRE them to go to primary care physicians first in order to even get a referral to a specialist--in our cases, rather than saving money in itsr gatekeeping, the practice tends to cost all of us money in the long run--doctors, patients, and insurance companies.

EE03 05-31-2010 07:28 AM

Quote:

Originally Posted by glenntaj (Post 659887)
--I try to avoid primary care physicians as much as possible. It's nto thtat there aren't some good ones out there, but many of us here are such unusual cases by their standards that they are in over their heads with us with little idea how to handle our symptoms. (Not that specialists are necessarily more knowledgable either. I think the best way for most of us to go, if we can, is with clinical practices in tertiary centers or teaching hosptials that also do research and have more possibility of being on the cutting edge.)

I do feel for people who have insurance plans that REQUIRE them to go to primary care physicians first in order to even get a referral to a specialist--in our cases, rather than saving money in itsr gatekeeping, the practice tends to cost all of us money in the long run--doctors, patients, and insurance companies.

My PCP has turned out to be a life saver for me. He tracks all of my symptoms and he has quite a bit of knowledge about neuropathies. He has sent me to a teaching hospital for treatment and I need to go back due to changing symptoms. Luckily, my insurance doesn't require that I see him first, but he is here and he deals with my issues first hand so for me it makes sense. I've gone the route of the local neurologists and I haven't had any luck. They have their own in-house policies that prevent you from seeing someone else within their group and when you try to see a different one in the area, the Doctor politics kick-in and the patient suffers(speaking from my own experience here). Glenntaj, I agree that those who do require PCP visits for referrals really do cost a lot more in the long run both in terms of treatment and patient suffering.

DanP 05-31-2010 09:41 AM

EEO3 said: "My PCP has turned out to be a life saver for me" and to that I say: Ditto! I'm a 22 year PN victum and my new PCP asked if any of my prior Docs ever RXed the Duragesic Patch. My answer was no and I started those patches on 1-9-02 and once it was titrated up to the 100 strength my pain was (and remains) controlled for the first time since 1988!!! On 3-19-07 we raised the strength to 125mcg & it's working great. Praise the Lord ... and my PCP.

echoes long ago 05-31-2010 11:32 AM

i had a really good pcp also, very helpful, realized that i had a number of things going on and never even questioned referrals to specialists i needed to go to and who i wanted to go to. also filled out whatever forms i needed and wrote me several important letters. since this doctor moved to colorado ive had some who want me to go specialists for ground that has already been well covered and settled or others who ive had to argue with to get even antibiotics when ive felt respiratory infections coming on. If i dont get them early i have complications from asthma, wheezing, constant coughing, only able to take half breaths for over 12 weeks constantly 24/7 at times. so i go around the pcp now and just deal with the specialists. i miss my old pcp.

dahlek 05-31-2010 05:27 PM

We've gotten off topic a bit, but this discussion IS relevant...
 
Because most of us w/pn and other 'neuropathies' tend to have other complex and diverting issues that make it hard for either specialists or Primaries to see us as a WHOLE PERSON!
That said? I see my primary about once a year [exam-update], maybe twice? The 2nd time for a 'cold' that mite be 'something more'-in my case any hint of pneumonia will either shut my brain off or send me over a cliff! Why? Because the primary IS the 'gatekeeper'! You'd be surprised at your various docs' files on you? Who they've corresponded to and at what length [got good peeks on more than one time when docs have to leave me alone {w/file?} to take an emergency call - I don't really mind them doing that? Could be me sometime-tho I hope not.] -they write PAGES of updates to the primary! And to some of my other key docs too!!
Bob? When you can't get your doc for ANYTHING? Time to call and ask for an alternative---just say the old: We aren't connecting well. Leave it at that, no bad talk no reason for retributions-just a change. Ideally you'll get a 'live one' on the next try. I'll cross my fingers for you!
Mere? I've not had any autonomic testing? But I definitely have autonomic lymphatic symptoms- circulation and sweating are irregular, with swelling at all the wrong times? Little to no body oil production of the kind that keeps your skin moist and flexable-I'm going thru gallons of lotions now just to keep skin alive and not damaged? And I was told by the neuro diagnosing me that I'd likely have asorbtion problems w/vitamins and minerals [Mrs D? Thank you immensely for all you help over time-I almost understand it all, not quite but enough] -tho he never said why.
When I'd decided on the IVIG? All papers indicated that the kidneys and the liver should be checked regularly...as the cells that are mutant and killed by the Immune Globulins put extra stressors on these organs [as they go thru these organs on their way out]. Sooo for that? Ya gotta drink water for a couple of days afterwards to flush the worst of it all out!
As for the migraines? I'd only had 'non-aura' ones-they were enuf to scare me silly and I'd been cardiac, eye and vascular tested to the nth degree. They then just 'went away' AAAH! BUT When I get them now? They are very short and intermittent-followed by a new wave of muscular neuropathy issues. Scary enuf that.
Goodness knows? NEVER EVER ASK WHAT ELSE CAN HAPPEN? Cause it just mite! And WE DON'T WANT THAT!!! :hug::hug::hug:'s to all! Thanks too for letting me 'vent' a little? -j


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