Why we parkies recommend a specialist in movement disorders. - Parkinson's Disease Message Board

Bruce · 07-23-2001, 11:02 PM

This is part of an abstractand the authers are from The Parkinson's Disease and Movement Disorders Center at Albany, New York.

Motor fluctuations represent important late complications of pd disease problems treated with levodopa.Although treatmentof these problems improved with the emergence of numerous pharmolacologic and surgical therapies, the various options can be confusing. Pharmacologic treatmentis the first step. Polytherapy is often the rule in this case with a variety of agents available as adjunctive therapy with levodopa (Sinemet)The treatment can consist of combinations of these agents. No single algorithm can be used in all patients-therapy should be individualized. Physicians these patients need to be well versed in late complication patterns as well as the medications chosen. optimal doses vary, and often patients are considered treatment failures and taken off medications before reaching that level in more complicated cases, patients should be evaluated by a specialist in movement disorders

Pelicangirl · 07-24-2001, 06:24 AM

I couldn't agree more, Bruce. That is exactly the way I see it and what I have been recommending to people all the way along. It's so important to see a Movement
Disorder Specialist. They are up on things like PD. A regular neurologist isn't. It stands to reason that they can't be, it's just that they don't seem to be able to admit it.

Pelicangirl (aka Ruth)

queenbee54 · 07-25-2001, 12:08 AM

You are both so right on that. I wish I knew about this board a few years ago. My husbands neurologist talked about wanting to send him to a movements disorder center 3-4 years before he finally did. We were not real educated on what that was all about. This board alone would have been so helpful to us and it is wonderful it can help others too. Just understanding what others are going through with their meds etc. Just as you said, a regular neurologist is not up on PD and we also wasted a good year or more on the first neurologist who did really nothing for him except to say the jerking movements were from too much sinemet!

mimilast · 07-25-2001, 02:22 AM

I agree with you entirely. But as in all things, I think we should beware of overgeneralization.
If one is not satisfied with one's neuro or if someone is going to see a Doctor for the first time and is strongly suspecting PD, a movement disorder specialist is indeed recommended. Now there are neuros who are not movement disorder specialists ( they treat all sort of neurological disorders) who however are perfectly up-todate with PD drug treatment and who can do as good a job as a movement disorder specialist. That is the case of my neuro who has been following me for the past fifteen years.
If you feel you are adequately taken care of by a "plain neuro"(and now we have of way of knowing thanks to the wealth of information provided through the Internet), I'm not sure whether it is worth the trouble seeing a movement disorder doc, unless for a second opinion, which is of course a good thing to seek.

Pelicangirl · 07-25-2001, 08:38 AM

Yes, you are right, Mimi, that if you have confidence in your "plain" neuro, you should probably stay with him/her. But you should also get a second opinion from an MDS. I treated with my neuro for 9 years before I saw one, a Movement Disorder Specialist, and I had confidence that he was treating me correctly until just the last year or so. Then, when he said, "I'm not sure you have Parkinson's," and asked if I would mind seeing a MDS --- I didn't even know there was such a thing --- I jumped at the chance.

I was there for 5 minutes before she said, "And what on earth did he think you had?" She recognized the signs right away. So I feel like I wasted 9 years. At least now, with the help of this board and others, you know there is such a thing and can go for a second opinon.
Pelicangirl (aka Ruth)