DRUG INDUCED PARKINSON'S/SINEMENT

[Guest guest]

Hi every one, In doing some research on INDUCED PD/PD+ syndrome symptoms I

found this posted on the PIEN list the other day.

http://www.parkinsons-information-exchange-network-online.com/archive/093.html

Also, here is another link concerning Sinement.

http://www.sinemetcr.com/cross_site/CurrentSinemetCRPI.pdf

I also would appreciate your coments about reading these and other Doc's

that I find and post from time to time. If these are something that the

list does not want or need, just let me know and I will stop posting them

here for you to know about. OK ? I only do this because I sincerly care and

feel that every one should know but some times a person can cause others

harm, and that is something I do not want to have happen. These posting

have been just for your information only.

" tenacity's man "

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[Guest guest]

,

You asked for comments - here are mine.

Please note that the first article refers to medicines taken BEFORE a diagnoses

of PD (earlier in life). Dyskinesia IS a side effect of Sinemet, but is

NOT a symptom of PD or MSA and can often be treated with Amantadine or lowering

the dosage of Sinemet. OH - CAN be a side effect of Sinemet, but the Sinemet

allows somewhere between 30 and 45% of MSA patients to have some movement,

so it is a decision that the patient and doctor have to make on an individual

case by case. Most here have not taken Sinemet (El-dopa) before they were

diagnosed with PD. If you are taking more than 3 Sinemet 25/100's per day,

it could be extremely bad to suddenly go off Sinemet without ramping down.

We have also heard of people on the list (diagnosed with MSA) who were taken

off of Sinemet by their doctor to test it's effectiveness and even though

they had no "On and Off" periods, many lost significant movement within a

day or so - which leads some doctors to continue to give it to the patient.

I have told people on the list for well over three years that Sinemet could cause hallucinations especially if you are getting too much of it.

Florinef was not mentioned in either of these articles and I find little

in the way of evidence that it causes symptoms of MSA or PD. It is very

beneficial to many MSA patients in maintaining their BP at acceptable levels.

Going off of this medicine can cause a MSA patient's BP to drop to unacceptable

levers.

However, there ARE medicines which DO cause side effeccts like MSA and PD

symptoms such as amphetamines and opiates (pain-killers). Even overdoses

of things such as SOMA (a muscle relaxer) can cause MSA like symptoms. Since

MSA symptoms are MUCH closer to side effects of amphetamines and pain killers

(or even overdoses of muscle relaxers), why don't you point that out as well

as Sinemet? I freely admit that amphetamines, opiates and man-made painkillers

can cause many MSA like symptoms. Since you are trying to help people, point

out that pain killers can cause MSA symptoms to get worse or even cause MSA

symptoms.

It is ALWAYS good to read the information sheets that come with your medicines

and report to the doctor any side effects that you see listed on the sheets.

But if you read the second source you gave (Table I) you will see that very

few people had symptoms other than the well known ones of: dyskinesia, nausea

(which can usually be avoided by eating a cracker with your pill); hallucinations

(usually a sign of Sinemet overdose - but can also be caused by MSA itself);

and confusion (which is also caused by many other things such as UTI's).

If you are taking Sinemet for MSA, you should work carefully with your doctor

to regulate your Sinemet dosage. Several of us have discussed this before,

including Jim , myself, the Ford's (Australia), Barb Selleck, Barb

, etc. Even back three years ago.

Ralph Selleck used Sinemet and did have MSA according to his autopsy. Ken

was diagnosed as MSA, Sinemet helped him - and he had LBD according

to the autopsy - but it is still a degenerative brain disorder.

Charlotte was diagnosed as "Probable MSA" in 1995 at NIH by a group of experts

in brain disorders after two brain MRI's, a nerve conduction study, an EMG,

several full back MRI's and neurological examinations by three different

neurologists over a 5 year period. Two of those neurologists, Dr. Pincus

(then at town Univ) and Dr. Sigmund are advisors to the Washington,

DC Parkinson's support group. None of them mentioned any other test.

I am curious since Sinemet DOES help many people on the list and a few have

written me off list asking if they should stop taking it. I have told them

to ask their doctors - am I wrong in telling them to ask their doctors?

Note to all - to me - asking questions should NOT be condemned on this

list - it is NEVER dumb to ask questions - the most intelligent people I

know always ask questions until they completely understand the answers. That

was the way I made a living, asking questions until I understood the problem.

It is NOT that I don't want people to know facts about meds. It is how those "facts" are presented. It seems to me and some others on the list that you are saying that Sinemet and Florinef caused Deborah to be diagnosed as PD or MSA. Is that what you are saying? If so - exactly why do you feel that way? Did a doctor tell you that? I still do not understand why I can not

get an answer to these questions. I am NOT questioning that Deborah has

some sort of problem. I am sorry she has a problem. I am interested

in making sure people ask their doctors before going off ANY medication as

I feel not telling your doctor you are stopping a medicine can hurt you.

If you agree that a patient's doctor should be the final authority on stopping

medicines, and that you should watch ALL medicines for side effects, we probably

have no argument.

Take care, Bill Werre

------------------------------------------------

Setzer wrote:

Hi every one, In doing some research on INDUCED PD/PD+ syndrome symptoms I found this posted on the PIEN list the other day.http://www.parkinsons-information-exchange-network-online.com/archive/093.htmlAlso, here is another link concerning Sinement.http://www.sinemetcr.com/cross_site/CurrentSinemetCRPI.pdfI also would appreciate your coments about reading these and other Doc's that I find and post from time to time. If these are something that the list does not want or need, just let me know and I will stop posting them here for you to know about. OK ? I only do this because I sincerly care and feel that every one should know but some times a person can cause others harm, and that is something I do not want to have happen. These posting have been just for your information only. "tenacity's man"

[Guest guest]

Good morning Bill,

To answer your questions, hopefully. I posted these for a couple of

reasons. One is that The PD/MSA meds do in fact, work on other Brain

Transmitters. That is not to say that a person should not take the

medicine. Just the opposite, my goodness, if you have this disease,

something has to be given to get some or any kind of relief.

My reason for posting these is to alert people of the possible side affects.

I see too often on the list and I am not just talking about this list,

but people talking about different side affects and really don’t understand

why.

My feeling is that you the patient and or the caregiver should be well

informed so that if and or when these do occur, you know why or possibly

know why. I want you and the list to know that, and this is a fact Bill,

When Deborah was told to go off her Sinemet in July, shortly afterwards,

about 5 or 6 weeks later, Bill, you wouldn’t believe the difference. I am

not talking just about a little but a HUGE difference. I would say about

80% of her symptoms went a way. But that you must admit is simply from her

wrong diagnoses. That is another reason for some of my post , just that.

Wrong Diagnosis. Because it does happen. And it happens 20 to 30 % of the

time. That is why I was so adamant about the PET/SPECT scan. Deborah is

living proof. Three years taking all those PD/PD+ meds and THAN find out

she doesn’t have it. That is unacceptable, don’t you agree. Now I know

there are now approximately 700 people on this list and perhaps all have the

correct Diagnosis, but there “ was 701.”

Your on the money about taking too much Sinemet, however some have to, but

they do need to be monitored very closely by their Doctor just because of

the side affects.

For your information, Deborah never took amphetamines or any other pain

killers, even through I use to beg her to because the pain in her leg,

hands and feet were so bad. Even our doctor wanted her to so that she could

have relief, but she would deny any Rx for them that I would ask the doctor

for. She was always afraid of becoming addicted.

I find that most people and it is sad to say, just get the Rx and take the

med with out asking or reading up on them first. I think it should be a

policy of all doctors to sit with their patients and actually take a few

moments to explain any and all medicine to them. Leaving it up to a patient

in my humble opinion is just not acceptable. One can say, gee, the doctor

doesn’t have that kind of time but I disagree, if not him than his nurse or

someone he appoints in his office should do this at the time he actually

prescribes the medicine. I realize you can ask you pharmacist to explain

but actually how many really do and that is the problem.

As far as Florinef I don’t ever recall mentioning that as causing a

problem for Deborah, she did use it for a while about 3 years ago and only

for a month, but stopped it because it caused her to gain wait and saw no

benefit from it.

And finally, I am with you 100% about making sure “ONLY DO WHAT YOUR DOCTOR

Tells YOU AND DON’T MAKE A DECISSION WITH OUT HIM.” Your doctor is you

life line.

My thinking and please, all of you, not just Bill, I want you to be aware.

That is my purpose in ALL of this. It’s like I posted something the other

day about “your doctors visit”. It is your time and your money, for that

visit, some say, oh, I cant say something because it is the insurance or

Medicare who is paying this doctor for this visit or he is too busy. You

are really wrong. You work or worked all your life for these benefits and

you paid dearly for them and they are not a privilege, It was or is owed to

you. It is money you paid in the plan for and it is owed back to you. So

when your doctor spends so little time with you and looks at his watch,

Don’t worry, just keep on asking till you get ALL the answers. If your

doctor doesn’t want to do that, than you NEED a new doctor.

Bill, it is nice to have this debate with you and I hope this all on this

list understand why we do this. It is very educational isn’t it??????

It is good to have different opinions because it gives you knowledge and

that is something you can never get too much of.

Best regards,

“tenacity’s man”

>

>Reply-To: shydrager

>To: shydrager

>Subject: Re: DRUG INDUCED PARKINSON'S/SINEMENT

>Date: Mon, 07 Oct 2002 22:54:02 -0400

>

>,

>

>You asked for comments - here are mine.

>

>Please note that the first article refers to medicines taken BEFORE a

>diagnoses of PD (earlier in life). Dyskinesia IS a side effect of Sinemet,

>but is NOT a symptom of PD or MSA and can often be treated with Amantadine

>or lowering the dosage of Sinemet. OH - CAN be a side effect of Sinemet,

>but the Sinemet allows somewhere between 30 and 45% of MSA patients to have

>some movement, so it is a decision that the patient and doctor have to make

>on an individual case by case. Most here have not taken Sinemet (El-dopa)

>before they were diagnosed with PD. If you are taking more than 3 Sinemet

>25/100's per day, it could be extremely bad to suddenly go off Sinemet

>without ramping down. We have also heard of people on the list (diagnosed

>with MSA) who were taken off of Sinemet by their doctor to test it's

>effectiveness and even though they had no " On and Off " periods, many lost

>significant movement within a day or so - which leads some doctors to

>continue to give it to the patient. I have told people on the list for

>well over three years that Sinemet could cause hallucinations especially if

>you are getting too much of it.

>

>Florinef was not mentioned in either of these articles and I find little in

>the way of evidence that it causes symptoms of MSA or PD. It is very

>beneficial to many MSA patients in maintaining their BP at acceptable

>levels. Going off of this medicine can cause a MSA patient's BP to drop to

>unacceptable levers.

>

>However, there ARE medicines which DO cause side effeccts like MSA and PD

>symptoms such as amphetamines and opiates (pain-killers). Even overdoses

>of things such as SOMA (a muscle relaxer) can cause MSA like symptoms.

>Since MSA symptoms are MUCH closer to side effects of amphetamines and pain

>killers (or even overdoses of muscle relaxers), why don't you point that

>out as well as Sinemet? I freely admit that amphetamines, opiates and

>man-made painkillers can cause many MSA like symptoms. Since you are

>trying to help people, point out that pain killers can cause MSA symptoms

>to get worse or even cause MSA symptoms.

>

>It is ALWAYS good to read the information sheets that come with your

>medicines and report to the doctor any side effects that you see listed on

>the sheets. But if you read the second source you gave (Table I) you will

>see that very few people had symptoms other than the well known ones of:

>dyskinesia, nausea (which can usually be avoided by eating a cracker with

>your pill); hallucinations (usually a sign of Sinemet overdose - but can

>also be caused by MSA itself); and confusion (which is also caused by many

>other things such as UTI's).

>

>If you are taking Sinemet for MSA, you should work carefully with your

>doctor to regulate your Sinemet dosage. Several of us have discussed this

>before, including Jim , myself, the Ford's (Australia), Barb Selleck,

>Barb , etc. Even back three years ago.

>

>Ralph Selleck used Sinemet and did have MSA according to his autopsy. Ken

> was diagnosed as MSA, Sinemet helped him - and he had LBD according

>to the autopsy - but it is still a degenerative brain disorder.

>

>Charlotte was diagnosed as " Probable MSA " in 1995 at NIH by a group of

>experts in brain disorders after two brain MRI's, a nerve conduction study,

>an EMG, several full back MRI's and neurological examinations by three

>different neurologists over a 5 year period. Two of those neurologists,

>Dr. Pincus (then at town Univ) and Dr. Sigmund are advisors to the

>Washington, DC Parkinson's support group. None of them mentioned any other

>test.

>

>I am curious since Sinemet DOES help many people on the list and a few have

>written me off list asking if they should stop taking it. I have told them

>to ask their doctors - am I wrong in telling them to ask their doctors?

>Note to all - to me - asking questions should NOT be condemned on this list

>- it is NEVER dumb to ask questions - the most intelligent people I know

>always ask questions until they completely understand the answers. That

>was the way I made a living, asking questions until I understood the

>problem.

>

>It is NOT that I don't want people to know facts about meds. It is how

>those " facts " are presented. It seems to me and some others on the list

>that you are saying that Sinemet and Florinef caused Deborah to be

>diagnosed as PD or MSA. Is that what you are saying? If so - exactly why

>do you feel that way? Did a doctor tell you that? I still do not

>understand why I can not get an answer to these questions. I am NOT

>questioning that Deborah has some sort of problem. I am sorry she has a

>problem. I am interested in making sure people ask their doctors before

>going off ANY medication as I feel not telling your doctor you are stopping

>a medicine can hurt you. If you agree that a patient's doctor should be

>the final authority on stopping medicines, and that you should watch ALL

>medicines for side effects, we probably have no argument.

>

>Take care, Bill Werre

>

>------------------------------------------------

>

>

> Setzer wrote:

>

>>Hi every one, In doing some research on INDUCED PD/PD+ syndrome symptoms I

>>found this posted on the PIEN list the other day.

>>

>>http://www.parkinsons-information-exchange-network-online.com/archive/093.html

>>

>>Also, here is another link concerning Sinement.

>>

>>http://www.sinemetcr.com/cross_site/CurrentSinemetCRPI.pdf

>>

>>I also would appreciate your coments about reading these and other Doc's

>>that I find and post from time to time. If these are something that the

>>list does not want or need, just let me know and I will stop posting them

>>here for you to know about. OK ? I only do this because I sincerly care

>>and feel that every one should know but some times a person can cause

>>others harm, and that is something I do not want to have happen. These

>>posting have been just for your information only.

>>

>> " tenacity's man "

>>

>

>

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[Guest guest]

,

I agree wholeheartedly that people should read the literature with their

prescriptions. If any of you have not read up on your meds and lost

the literature - here is a good place to look any medicine up:

http://www.nlm.nih.gov/medlineplus/druginformation.html

For clarification, I have never said Deborah took amphetamines or pain

killers. Some people have in the past mentioned taking them and did NOT

mention reading the literature about them. I feel strongly that people

with MSA should be strongly aware of the problems that those drugs can

cause MSA patients especially.

I am glad you agree that the doctor needs to be the final authority on

drug use. I also feel that PET scans may be a useful tool in diagnoses

and will be greatly interested in learning the final decision on what

Deborah's diagnoses. I do still feel that most people on the list do

not need a PET scan for a daignoses of MSA. If they have a diagnoses of

" possible MSA " , maybe it would be useful if they could get to someone

who uses it often with MSA cases, but as you found, the original doctor

could not interpret it. Not everyone can afford to go 1000 miles to get

a second opinion. I would love to see the US medical care system

improved to allow complete care and diagnostic capability to be

available to everyone, but in truth some can not even get someone to

bathe the patient when there is an obvious need.

Charlotte was diagnosed with MSA in 1995 and a year later it was obvious

that she had it, as she could no longer walk at all. In addition she

had trouble moving her hands, swallowing and other symptoms of MSA. I

am glad that Deborah does not have it. Hopefully they will be able to

help her.

Take care, Bill Werre