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Murrph.... One thing really bothers me about the "general neurologists" (as opposed to the movement disorders specialist neuros) that I have been to over the 21 years I've had PD - and I should add that there's only been a total of 4 or maybe 5 - is that not a one ever told me that there WAS such a thing as a movement disorder specialist. It took my literally STUMBLING on the YPDA BBS a few years ago to find that valuable information. We should NOT have to rely upon dumb luck to get the TYPE of physician who'd be the optimum one to manage our health care with us. IF I hadn't been fortunate enough to tap into the combined experience AND knowledge of a group of individuals WITH PD, I'd still be wandering around trying to get a PD-savvy doctor, and I'd never have heard about movement disorder specialists or the surgeries that are available to us. It seems to me, that no matter how compassionate my general neuro may be (and my original one was that), without exception they and also all GPs/Internists I've seen over the years just can't seem to grasp the full picture of this disease. Generally the response to me has been 'But you LOOK normal... not a bit like you have Parkinson's." And then they 'tune out" of the Parkinson's part of me completely unless I shove it down their throat because I need a drug change or as now when I asked to see a speech therapist. "Looking" normal and BEING 'normal" are two different things, and I LOOK normal because of having had a successful pallidotomy and because I take drugs (as so we all, it seems) which masks the most obvious symptoms of the disease (at least now.. since the surgery they mask symptoms). As I'm typing this, I've realized that virtually all of US (here on the list) seem to weigh whatever general medical problem or symptoms we may be experiencing against the PD... For instance, when I began getting bursitis fairly regularly in one of my shoulders, I immediately wondered it this was something related to PD. My managing doctor at Kaiser Permanente (an HMO) never even thought of any correlation between the two. Yet I've read several posts here on the list referring to list members having nasty, bursitis-like pain in a shoulder joint. Upon doing further research, I found that shoulder pain isn't all uncommon when one is beginning to get PD on the OTHER side of one's body when one's had it on only one side thus far. And sure enough, it appears I'm one of the 30% of Parkies who get that bursitis-like pain before the disease makes an obvious appearance on the other side of their body, 'cause it showed up on my left side this year. It would seem natural to me that the FIRST thing one's MD would do is to rule out any PD-related issues when we go to them with a problem, but that just doesn't seem to be the case. Barb Mallut "Lil_Honey" on the PD Chat [log in to unmask] ---------- From: PARKINSN: Parkinson's Disease - Information Exchange Network on behalf of Ron Murphy Sent: Thursday, January 23, 1997 3:16 AM To: Multiple recipients of list PARKINSN Subject: Re: doc's ignorance > John Morey wrote: > > > > Marling wrote.....>Has anyone else experienced the sensation that some > > doctors don't know anything > > >about PD except that it makes you shake? > > > > > >Sometimes when I speak with doctors (even neuros) I feel as though I should be > > >the MD and they should be sitting in a classroom letting me teach them. > > > > > >It feels weird to know so much about a subject, and expect that the doctors > > >should know more, but don't. > > > > Marling, many times I feel I know more than the Dr. They are not all > > knowing (even if they think they are!!). I tend to give copies of articles > > to the Dr. that support my position and that the Dr. will read. As has been > > stated many times, the person with the condition has the greatest interest > > in the outcome. It is too important to be left to the Dr.! It is up to you > > to manage it; you have much more to lose if something goes wrong! > > Peace, John We as Parkies live with this disease. To do so many of us have done extensive research into the cause, effect and treatment. Our research is on going, only on one subject and that of course is PD. On the other hand a doctor even neuro specialist are involved in a multitude of diseases. Not to mention I haven't talked to two Parkies with the same difficulties as yet. So that we seam to know more than our doctors should come as no surprise to any of us as we focus on but one subject all the days, hours and minites of our lifes. Maybe not so much focus as just the fact that we live it. I have taken many articles to my doctor on PD to find him surprise with what he called new information. Its scary but then again doctors are people too. MURPH Lost in a small village in Arkansas