Bruce
07-24-2001, 02:02 AM
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
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
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Pelicangirl
07-24-2001, 09:24 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)
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, 03:08 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, 05:22 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.
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, 11:38 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)
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)
Googy
07-25-2001, 06:34 PM
One more for the road.Our Neuro whom we had for many years,had put Bill on a drug holiday in the hospital for a week,as Bill wasnt responding to the meds.I took him out on the 5 th day as the staff had no idea how to treat a PD patient.At that time our Neuro sent us to a Movement Disorder Specialist.It took 6 weeks but we did get him going.I had to keep a log on all the Ups and downs.We then went back to our old friend the Neuro.Stayed with him till we moved here.
Googy
Googy
Lory
07-26-2001, 09:54 AM
Originally posted by Bruce:
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
Bruce and others, Thank you for your postings. I can't tell you how beneficial they are to me. I only check in here aobut once a week, but I always read something useful, positive, and informative. I frequently pass the info on to our support group, here in Eugene, OR. Keep up the good work, I don't have the time to do all I want as far as activism, but I do want to stay informed. My "plain" neuro is great, and doens't hesitate to have me revisit the MDS when needed. Lory
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
Bruce and others, Thank you for your postings. I can't tell you how beneficial they are to me. I only check in here aobut once a week, but I always read something useful, positive, and informative. I frequently pass the info on to our support group, here in Eugene, OR. Keep up the good work, I don't have the time to do all I want as far as activism, but I do want to stay informed. My "plain" neuro is great, and doens't hesitate to have me revisit the MDS when needed. Lory
Bruce
07-26-2001, 10:23 AM
Mimi, I totally agree with everything you said. Actually I haave come full circle in my treatment. I now see a "plain" neurologist" who first diagnosed me 10 years ago.. I now have the knowledge and experience to see my preent neurologisis well informed about pd.
After reading all thee followups, to someone that pd is new to you, their is a wealth of information in each message. In fact, if it is important to, I would print it out and refer to all these messages in the future.
Bruce
After reading all thee followups, to someone that pd is new to you, their is a wealth of information in each message. In fact, if it is important to, I would print it out and refer to all these messages in the future.
Bruce
Austin
09-08-2001, 04:38 PM
Hi Guys & Gals, Many intensifed travels since I was here last... Good to hear you're doing well, Bruce, and can handle the vacuuming... but I do have a better solution...it's called a girlfriend!!!... In my travels, I have found that an MDS is the way to go, BUT, as in all other endeavors, there are "Good" ones and "poor" ones. Examine the MDS to make sure.
Caring
09-08-2001, 11:44 PM
He he he, you don't know the half of it Austin. :)
I went to see one, and did not take my medication so he could see my tremors. As a result, I was shaking pretty bad, and of course, I get emotional after my tremors. I can feel that it's a chemical thing. You know how when you can feel that, it's something you have no control over.
So the MDS sees I'm sad, and tells me to have a BABY TO CHEER ME UP?!!! It's a good thing he didn't catch me in one of my agitated states, or it wouldn't have been pretty! I would bet that most MDS's are great, but found out after visiting this one, that he apparently is not the best in his field.
And so the search for diagnosis continues. :(
Take Care now.
Sincerely,
Caring
I went to see one, and did not take my medication so he could see my tremors. As a result, I was shaking pretty bad, and of course, I get emotional after my tremors. I can feel that it's a chemical thing. You know how when you can feel that, it's something you have no control over.
So the MDS sees I'm sad, and tells me to have a BABY TO CHEER ME UP?!!! It's a good thing he didn't catch me in one of my agitated states, or it wouldn't have been pretty! I would bet that most MDS's are great, but found out after visiting this one, that he apparently is not the best in his field.
And so the search for diagnosis continues. :(
Take Care now.
Sincerely,
Caring
Bruce
09-11-2001, 07:51 PM
Caring, I enjoyed your comments about your MDS, but he sounds like a few I have worked with at the hospital, a little weird.
If you want to see a specialist who could be more interesting, see a "shrink." I have never felt the need to seee one, but I have heard some fascinating stories
Bruce
If you want to see a specialist who could be more interesting, see a "shrink." I have never felt the need to seee one, but I have heard some fascinating stories
Bruce
Bsan3333
09-12-2001, 05:24 AM
All of the talk about MDS really peaked our interest. We made an appointment for my mom (actually my wife did) for Sep. 21 in Sunnyvale, CA and look forward to hearing what he has to say. Even if he says that we are on the right course it will ge reassuring to hear from someone that sees more PD patients.
[This message has been edited by Bsan3333 (edited 09-12-2001).]
[This message has been edited by Bsan3333 (edited 09-12-2001).]