Re: RE: Neuroleptic induced Parkinsonism -and causes- Bill W.

[Guest guest]

Bill,

I have never taken Florinef nor " uppers " or " downers " for what I was

diagnosed with. My neurologist, in Louisiana, whom was not a MDS started me

on Sinemet CR 25/100 2 X day.

It was Dr. Jankovic at Baylor in Houston, not me, as you implied.... whom

is well known and respected as a leader in his field.... that increased my

Sinemet to Sinemet CR 50/200 4 X day + added Compton 200mg 4 X day + added

Mirapex .25mg 4 X day and titrated the Mirapex up to 9mg a day.

My symptoms worsened. I did develop dystonia in the neck and feet though

I have almost no tremor. Rigidity and pain were my primary symptoms. Dr.

Jankovic, after careful treatment on medications upped my Dx to MSA after

the rapid progression of symptoms.

I fought the doctors when offered pain medication for my pain " downers " .

They said I needed this to " treat the symptoms " I didn't want to depress my

system more. I did, and I will admit it, start taking Darvocette PRN last

November but only when the pain was so sever that I could not move without

crying.

After 4 years of battling MSA, and the PET scans... once determined that

it was not PD or MSA, the MDS's ran extensive tests on me and then and only

then made their pronouncement of drug-induced MSA. Amazingly, after

stopping the Sinemet and other PD type medications, within 2 months, I am no

longer lying in bed asking for hospice but up and running and once again

facing having a life.

I am so grateful that took a stance when I gave up and refused to

give in to me dying by " treating the symptoms " ... If he would have, I would

have died before Christmas of this year.

I am well aware that the members of this list, for the most part, don't

have a drug-induced MSA. I know, for fact, that the diagnosis that I was

given in combination with the medications that I was given caused 75% of my

terminal bound physical problems.

I thought I was being polite and sharing valuable information with the

group and since there are so many people on it who do research and run into

" interesting " studies everyday... I asked that they send me any info that

they have " offline " so that I can try to continue to understand the

biological causes of my problems.

If it were not for the members of this group and their compassion,

would not have been able to be as strong as he was, I would not have had the

education that I gained and most importantly, We would have never found the

facility and the genius MDS's in NY that found out what was part to blame

for my decline.

Bill, my questions are not without merit nor is my struggle to once again

find hope for living. I don't tell anyone, ever, to stop their meds or this

will do this to you or that will do that to you. I just believe that the

whole person needs to be treated, not just the symptoms and wait patiently

for death. I belive in the intelligence and training of the MDS's that I

have seen and did exactly as they told me. I also believe that the majority

of MDS's do what they do for the patient and caregiver to help them as best

they can. In my case, the medications given to improve my quality of life

were responsible for making my physical problems worse, thus taking away

from my quality of life. For heaven's sake Bill, I am not trying to damage

the members of this group by offering them some " alternative " means of

treating this horrible disease but I do have the right to tell my story and

show that sometimes God has mercy through prayer and perserverence to help

one soul out of the darkness and thus provide others with some hope. If you

take hope away, then what is left?

Yes, warm slippers, robe and everything else is needed here in NC today as

the temp currently is only 34 degrees.

Hugs and Warm Fuzzies,

Deborah aka Tenacity

Personal website & photo's

http://www.pdhangout.com

http://community.webshots.com/user/tenacitywins

_________________________________________________________________

The new MSN 8: smart spam protection and 2 months FREE*

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[Guest guest]

Bill,

I have never taken Florinef nor " uppers " or " downers " for what I was

diagnosed with. My neurologist, in Louisiana, whom was not a MDS started me

on Sinemet CR 25/100 2 X day.

It was Dr. Jankovic at Baylor in Houston, not me, as you implied.... whom

is well known and respected as a leader in his field.... that increased my

Sinemet to Sinemet CR 50/200 4 X day + added Compton 200mg 4 X day + added

Mirapex .25mg 4 X day and titrated the Mirapex up to 9mg a day.

My symptoms worsened. I did develop dystonia in the neck and feet though

I have almost no tremor. Rigidity and pain were my primary symptoms. Dr.

Jankovic, after careful treatment on medications upped my Dx to MSA after

the rapid progression of symptoms.

I fought the doctors when offered pain medication for my pain " downers " .

They said I needed this to " treat the symptoms " I didn't want to depress my

system more. I did, and I will admit it, start taking Darvocette PRN last

November but only when the pain was so sever that I could not move without

crying.

After 4 years of battling MSA, and the PET scans... once determined that

it was not PD or MSA, the MDS's ran extensive tests on me and then and only

then made their pronouncement of drug-induced MSA. Amazingly, after

stopping the Sinemet and other PD type medications, within 2 months, I am no

longer lying in bed asking for hospice but up and running and once again

facing having a life.

I am so grateful that took a stance when I gave up and refused to

give in to me dying by " treating the symptoms " ... If he would have, I would

have died before Christmas of this year.

I am well aware that the members of this list, for the most part, don't

have a drug-induced MSA. I know, for fact, that the diagnosis that I was

given in combination with the medications that I was given caused 75% of my

terminal bound physical problems.

I thought I was being polite and sharing valuable information with the

group and since there are so many people on it who do research and run into

" interesting " studies everyday... I asked that they send me any info that

they have " offline " so that I can try to continue to understand the

biological causes of my problems.

If it were not for the members of this group and their compassion,

would not have been able to be as strong as he was, I would not have had the

education that I gained and most importantly, We would have never found the

facility and the genius MDS's in NY that found out what was part to blame

for my decline.

Bill, my questions are not without merit nor is my struggle to once again

find hope for living. I don't tell anyone, ever, to stop their meds or this

will do this to you or that will do that to you. I just believe that the

whole person needs to be treated, not just the symptoms and wait patiently

for death. I belive in the intelligence and training of the MDS's that I

have seen and did exactly as they told me. I also believe that the majority

of MDS's do what they do for the patient and caregiver to help them as best

they can. In my case, the medications given to improve my quality of life

were responsible for making my physical problems worse, thus taking away

from my quality of life. For heaven's sake Bill, I am not trying to damage

the members of this group by offering them some " alternative " means of

treating this horrible disease but I do have the right to tell my story and

show that sometimes God has mercy through prayer and perserverence to help

one soul out of the darkness and thus provide others with some hope. If you

take hope away, then what is left?

Yes, warm slippers, robe and everything else is needed here in NC today as

the temp currently is only 34 degrees.

Hugs and Warm Fuzzies,

Deborah aka Tenacity

Personal website & photo's

http://www.pdhangout.com

http://community.webshots.com/user/tenacitywins

_________________________________________________________________

The new MSN 8: smart spam protection and 2 months FREE*

http://join.msn.com/?page=features/junkmail

[Guest guest]

Deborah,

Deborah Setzer wrote:

I have never taken Florinef nor " uppers " or " downers " for what I was

diagnosed with. My neurologist, in Louisiana, whom was not a MDS started me

on Sinemet CR 25/100 2 X day.

It was Dr. Jankovic at Baylor in Houston, not me, as you implied.... whom

is well known and respected as a leader in his field.... that increased my

Sinemet to Sinemet CR 50/200 4 X day + added Compton 200mg 4 X day + added

Mirapex .25mg 4 X day and titrated the Mirapex up to 9mg a day.

I did not mean to imply that you upped your meds on your own or took any

particular meds. The engineer in me insists that I try to understand

any problem and seek a logical explanation for it. I am glad you kept

looking for an answer and found a treatment for whatever you have. I

have always advocated working with the doctor to treat the symptoms as

best you can.

>I fought the doctors when offered pain medication for my pain " downers " .

>They said I needed this to " treat the symptoms " I didn't want to depress my

>system more. I did, and I will admit it, start taking Darvocette PRN last

>November but only when the pain was so sever that I could not move without

>crying.

>

Some people DO need pain killers at times. Charlotte used them

intermittently and used them strictly according to the doctor's orders.

She did have a disc problem as well as MSA.

>After 4 years of battling MSA, and the PET scans... once determined that

>it was not PD or MSA, the MDS's ran extensive tests on me and then and only

>then made their pronouncement of drug-induced MSA. Amazingly, after

>stopping the Sinemet and other PD type medications, within 2 months, I am no

>longer lying in bed asking for hospice but up and running and once again

>facing having a life.

>

I am not sure what all Sinemet would do to a person who is producing

their own dopamine, but I would certainly expect dyskinesia

(uncontrolled tremor and movement). Since that would be an overdose of

dopamine, I would also suspect hallucinations (which should have been a

sign to the doctor that you were overdosing on Sinemet). I don't

remember what other meds you were using but dopamine agonists may have

caused some of the rigidity you mention. Florinef should have raised

your BP to unaceptable high readings. In general, the side effects

should have been recognized by the doctor, but maybe their idea of what

you were telling them did not register at the time (I don't know and am

not impling anything - only trying to understand).

>I thought I was being polite and sharing valuable information with the

>group and since there are so many people on it who do research and run into

> " interesting " studies everyday... I asked that they send me any info that

>they have " offline " so that I can try to continue to understand the

>biological causes of my problems.

>

I completely understand your wanting to know and understand your

illness. I have worked for over 12 years to understand PD and MSA and

fought it as long as we could. I applaud you and for trying to

understand it rather than give in to it.

>If it were not for the members of this group and their compassion,

>would not have been able to be as strong as he was, I would not have had the

>education that I gained and most importantly, We would have never found the

>facility and the genius MDS's in NY that found out what was part to blame

>for my decline.

>

I am also glad for you that you found help in your case. I hope that

they find the complete reasons you had the problem and hope you will let

us all know what the cause was if they ever find out.

>Bill, my questions are not without merit nor is my struggle to once again

>find hope for living. I don't tell anyone, ever, to stop their meds or this

>will do this to you or that will do that to you. I just believe that the

>whole person needs to be treated, not just the symptoms and wait patiently

>for death. I belive in the intelligence and training of the MDS's that I

>have seen and did exactly as they told me. I also believe that the majority

>of MDS's do what they do for the patient and caregiver to help them as best

>they can. In my case, the medications given to improve my quality of life

>were responsible for making my physical problems worse, thus taking away

>from my quality of life. For heaven's sake Bill, I am not trying to damage

>the members of this group by offering them some " alternative " means of

>treating this horrible disease but I do have the right to tell my story and

>show that sometimes God has mercy through prayer and perserverence to help

>one soul out of the darkness and thus provide others with some hope. If you

>take hope away, then what is left?

>

I am not trying to take away your hope or discourage anyone from seeking

additional help. I was trying to use your experiences to try to make a

point that people should communicate completely with their doctor and

beware of new ideas (such as the DBS operation) without checking around.

There have been several communications even on this list about possible

" cures " which are very off base and one included using the drug I

mentioned (sp) (norepridine) which was listed in your website. That

drug should be carefully considered before using - that is why I

suggested checking it out with your doctor. No one on this list should

take " new " medications without knowing exactly what they are AND

checking them out with their doctor (or even getting more opinions as

you did). The drug mentioned on the website as causing MSA-like

symptoms (sp) (norepridine) HAS been mentioned in one " cure " for MSA

which was suggested to a member of this list (not you that I know of).

Several members of our list have been advised by questionable " doctors "

to stop their Sinemet even though the Sinemet WAS actually helping them

with movement. If it sounds too good to be true and not coming from

members of the list you know - it is probably not true - especially if

it is going to cost you lots.

Most good doctors work with you to adjust the meds if they seem to be

helping you (such as increased movement from using Sinemet). Several

caregivers (like Jim , and others) actually fine tune Sinemet use

and vary it from day to day depending on stress, heat and other

conditions. I even timed doctor visits to show the doctor timing

considerations of Charlotte's reaction to the Sinemet. The doctor (and

physical therapist) could see Charlotte's increased mobility within

about 15 minutes when given via the PEG tube.

>Yes, warm slippers, robe and everything else is needed here in NC today as

>the temp currently is only 34 degrees.

>

It is cold here too and I have to go out and play two softball games

this morning. I hope this note convinces you that I am only interested

in what caused your problems to warn others how to spot problems. If I

have not communicated well, write me back so we can work out any

differences in our views. I am hurrying to get out to my ball game and

may not have communicated everything well. I know you are a warm person

and am not trying to hurt you - only to understand what happened to you.

Stay warm and give a hug, both of you need it.

Take care, Bill Werre

[Guest guest]

Deborah,

Deborah Setzer wrote:

I have never taken Florinef nor " uppers " or " downers " for what I was

diagnosed with. My neurologist, in Louisiana, whom was not a MDS started me

on Sinemet CR 25/100 2 X day.

It was Dr. Jankovic at Baylor in Houston, not me, as you implied.... whom

is well known and respected as a leader in his field.... that increased my

Sinemet to Sinemet CR 50/200 4 X day + added Compton 200mg 4 X day + added

Mirapex .25mg 4 X day and titrated the Mirapex up to 9mg a day.

I did not mean to imply that you upped your meds on your own or took any

particular meds. The engineer in me insists that I try to understand

any problem and seek a logical explanation for it. I am glad you kept

looking for an answer and found a treatment for whatever you have. I

have always advocated working with the doctor to treat the symptoms as

best you can.

>I fought the doctors when offered pain medication for my pain " downers " .

>They said I needed this to " treat the symptoms " I didn't want to depress my

>system more. I did, and I will admit it, start taking Darvocette PRN last

>November but only when the pain was so sever that I could not move without

>crying.

>

Some people DO need pain killers at times. Charlotte used them

intermittently and used them strictly according to the doctor's orders.

She did have a disc problem as well as MSA.

>After 4 years of battling MSA, and the PET scans... once determined that

>it was not PD or MSA, the MDS's ran extensive tests on me and then and only

>then made their pronouncement of drug-induced MSA. Amazingly, after

>stopping the Sinemet and other PD type medications, within 2 months, I am no

>longer lying in bed asking for hospice but up and running and once again

>facing having a life.

>

I am not sure what all Sinemet would do to a person who is producing

their own dopamine, but I would certainly expect dyskinesia

(uncontrolled tremor and movement). Since that would be an overdose of

dopamine, I would also suspect hallucinations (which should have been a

sign to the doctor that you were overdosing on Sinemet). I don't

remember what other meds you were using but dopamine agonists may have

caused some of the rigidity you mention. Florinef should have raised

your BP to unaceptable high readings. In general, the side effects

should have been recognized by the doctor, but maybe their idea of what

you were telling them did not register at the time (I don't know and am

not impling anything - only trying to understand).

>I thought I was being polite and sharing valuable information with the

>group and since there are so many people on it who do research and run into

> " interesting " studies everyday... I asked that they send me any info that

>they have " offline " so that I can try to continue to understand the

>biological causes of my problems.

>

I completely understand your wanting to know and understand your

illness. I have worked for over 12 years to understand PD and MSA and

fought it as long as we could. I applaud you and for trying to

understand it rather than give in to it.

>If it were not for the members of this group and their compassion,

>would not have been able to be as strong as he was, I would not have had the

>education that I gained and most importantly, We would have never found the

>facility and the genius MDS's in NY that found out what was part to blame

>for my decline.

>

I am also glad for you that you found help in your case. I hope that

they find the complete reasons you had the problem and hope you will let

us all know what the cause was if they ever find out.

>Bill, my questions are not without merit nor is my struggle to once again

>find hope for living. I don't tell anyone, ever, to stop their meds or this

>will do this to you or that will do that to you. I just believe that the

>whole person needs to be treated, not just the symptoms and wait patiently

>for death. I belive in the intelligence and training of the MDS's that I

>have seen and did exactly as they told me. I also believe that the majority

>of MDS's do what they do for the patient and caregiver to help them as best

>they can. In my case, the medications given to improve my quality of life

>were responsible for making my physical problems worse, thus taking away

>from my quality of life. For heaven's sake Bill, I am not trying to damage

>the members of this group by offering them some " alternative " means of

>treating this horrible disease but I do have the right to tell my story and

>show that sometimes God has mercy through prayer and perserverence to help

>one soul out of the darkness and thus provide others with some hope. If you

>take hope away, then what is left?

>

I am not trying to take away your hope or discourage anyone from seeking

additional help. I was trying to use your experiences to try to make a

point that people should communicate completely with their doctor and

beware of new ideas (such as the DBS operation) without checking around.

There have been several communications even on this list about possible

" cures " which are very off base and one included using the drug I

mentioned (sp) (norepridine) which was listed in your website. That

drug should be carefully considered before using - that is why I

suggested checking it out with your doctor. No one on this list should

take " new " medications without knowing exactly what they are AND

checking them out with their doctor (or even getting more opinions as

you did). The drug mentioned on the website as causing MSA-like

symptoms (sp) (norepridine) HAS been mentioned in one " cure " for MSA

which was suggested to a member of this list (not you that I know of).

Several members of our list have been advised by questionable " doctors "

to stop their Sinemet even though the Sinemet WAS actually helping them

with movement. If it sounds too good to be true and not coming from

members of the list you know - it is probably not true - especially if

it is going to cost you lots.

Most good doctors work with you to adjust the meds if they seem to be

helping you (such as increased movement from using Sinemet). Several

caregivers (like Jim , and others) actually fine tune Sinemet use

and vary it from day to day depending on stress, heat and other

conditions. I even timed doctor visits to show the doctor timing

considerations of Charlotte's reaction to the Sinemet. The doctor (and

physical therapist) could see Charlotte's increased mobility within

about 15 minutes when given via the PEG tube.

>Yes, warm slippers, robe and everything else is needed here in NC today as

>the temp currently is only 34 degrees.

>

It is cold here too and I have to go out and play two softball games

this morning. I hope this note convinces you that I am only interested

in what caused your problems to warn others how to spot problems. If I

have not communicated well, write me back so we can work out any

differences in our views. I am hurrying to get out to my ball game and

may not have communicated everything well. I know you are a warm person

and am not trying to hurt you - only to understand what happened to you.

Stay warm and give a hug, both of you need it.

Take care, Bill Werre