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Old 04-06-2012, 02:17 PM
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Dr. Smith Dr. Smith is offline
Senior Member (**Dr Smith is named after a character from Lost in Space, not a medical doctor)
Dr. Smith's Avatar
 
Join Date: Oct 2010
Location: Lost in Space
Posts: 3,515
10 yr Member
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Trisha,

Some of what you say is true; doctors (on average) only hear about 25% of what their patients tell them, and patients (again, on average) only hear about 50% of what their doctors say. With as much as they have on their minds, and how those minds work as they're trying to help us, this is understandable and forgivable. But for a doctor to write something in his notes that is blatantly false (such as a treatment lasting 14 days when it hasn't been 14 days) is not IMO, acceptable. The best way I know of to improve this situation is to bring someone (advocate/caregiver/witness) with you to all appointments to take notes, reinforce your questions/positions, and in general, witness what's said & done. If that's impossible, be sure to take your own notes, and get copies of all of your records (the latter should be done anyway). When you see something in those records that is not correct, you do have a right and obligation to send a letter correcting any errors.

I agree with Jo*mar about the podiatrist.

Your PCP's behavior may be explained by this doctor's blog post:
http://distractible.org/?p=3912

FWIW, I've had 2 neurologists and 1 gastroenterologist "wash their hands" of me because they did their tests, felt there was nothing else/more they could do for me (except tell me I could come back in a year to tell them "how I was getting along") and send me on my way. It was after the first one (the gastroenterologist) that I became my own advocate and took responsibility for my own care & treatment. As Dr. Rob says in his post above, it's not unusual for patients to learn/know more about their conditions than their doctors do, and that's exactly what I did, and got better on my own than they were getting me. That (IMO) is what we patients with difficult chronic intractable conditions must all do. This is one of the best things about support groups. We can share experience & knowledge, do our own research and become our own experts, and use all that to help our team of professionals help us. I've gotten better on my own in both cases (IBS & PN), but I keep the doctors who care in the loop, both for my own safety and to help them become better doctors. The good ones appreciate that; the bad ones shrug it off and make excuses.

Seeing a therapist may help. Just be aware that they can vary as much as other doctors, so if the fit is not exactly right for you, keep looking and find another. Also, see them for as long as you feel you need to; most good ones should be willing to reduce scheduling to an "as-needed" basis once you feel you've got a better handle on things. You don't want one like the podiatrist that will keep you coming just to collect fees.

Here's a post in which I attached one schematic of what a support network might look like (click on the thumbnail to see it better).
http://neurotalk.psychcentral.com/post839895-51.html
It can take some time to build an effective team, but you're on the right track.

Here are some other techniques I've found helpful in coping with the vicious cycle of pain/depression/insomnia:
http://tinyurl.com/2c642oa
(written/posted before developing peripheral neuropathy)

Best wishes,

Doc
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Dr. Zachary Smith
Oh, the pain... THE PAIN...

Dr. Smith is NOT a medical doctor. He was a character from LOST IN SPACE.
All opinions expressed are my own. For medical advice/opinion, consult your doctor.
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