Quote:
Originally Posted by rosebud
While scouting about for a new GP A friend with PD told me about her experience: She had a female Dr. for awhile thinking the female dr would be more interested in doing some homework on PD. As they talked over several visits my friend came to understand that her married, with children GP had little time for such frivolity as researching PD. She had much better luck with a young male Dr. who was working at building his practice. Of course he had a wife to do his laundry, cook dinner and do all those womanly jobs (oooww, lets not get cynical here now). Her Neurologist was an older fellow who played golf, knew all he wanted (needed) to know, and had a full schedule of patients. She knew more about PD than he did, or at least that seemed to be the case. Now totally disillusioned she went to a witch doctor, who had time to talk to her, do some reading and actualy had some reasonably sane input. Question: Who qualifies as a medical researcher? My Neuro has been challanged several times and found wanting. You can lead a horse to water but you can't make him drink.
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This sounds all to familiar. My PCP makes dumb remarks after reading the reports from neurologist like this is in my head, etc. I told him to check out this website, but he refuses too, although he's quite technically savvy. We go into some really in-depth discussions about PC innards that would make any geek's ears turn red! So in his case, he's just lazy.
My first neurologist made up his mind on the first visit that I had focal dystonia even after the presentation of reduced mobility and arm swing. He was pumping me with klonopin and baclofen, neither of which did anything for me but make me feel ill. He was treating symptoms instead of the problem. This is like pumping air into a tire to keep it in inflated when there's a flat. I sad this to my primary care doctor and he didn't like it.
Later when neuro #1 gave me Sinemet, and I had a good report for him, he still maintained it was dystonia. I was still getting the horrid foot cramps, but it's only dysonia, I would twitch all night, had some really violent dreams, etc.; It's only dystonia. Finally when he missed something very important in a report to my primary care doctor, did I get my second opinion.
The new doctor is different. She reads, she listens, and she's a published author. She spends the time with me and provides feedback as to what's going on now, and what can go on later. She also has an open mind, and is very slow in her diagnosis. She even told me that the spasticity could easily have been mistaken for dystonia. The first doctor had a stack of brochures on his desk for dystonia and was handing them out like supermarket advertisements!
She didn't make up her mind the minute she saw me. In addition to the neurological tests and EMG/NCCV that we get when we visit a new a new neurologist, she ran some extra MRIs on my spine and some in depth blood tests. These additional tests found that I have a syrinx on my spine and that my B-12 was quite low. I've been with her just about a year now, and the world is totally different. I wish everyone was as lucky as I have been this second time around.
John