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Old 07-02-2012, 04:55 PM
d0gma d0gma is offline
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Join Date: May 2011
Location: west coast ca
Posts: 128
10 yr Member
d0gma d0gma is offline
Member
 
Join Date: May 2011
Location: west coast ca
Posts: 128
10 yr Member
Wink

My reaction is also Holy Cow. What a complex multi-pharmaceutical and otherwise nightmare. Bless your heart. It makes me more than a little mad that your GP took what I think is an inappropriate step in putting you on such a drug as sinemet without sending you to a movement order specialized (board certified) doc in the specialty of movement disorders. There is a VERY good reason doctors specialize--one can't be an expert in all things.

Parts of this address Candace and part the request for an update.

This is the link to my vid I made to document my voyage in quitting sinemet. I was up to 2300 mg+ every day and have what looks like lead pipe dyskinesia. This what shot at the height of my dosing. Sorry it's boring-it's documentation. The password is pd

https://vimeo.com/home/myvideos/page...e/format:video

I'll load a more recent vid when I can at 450 mg and 750 mg/day. It's amazing.

I haven't loaded more recent because I had a setback and have been off the computer due to a shoulder injury from the exacerbated tremor that comes with down-dosing. I also got really bummed to give up such hard won ground. Weeks of bad times and fighting this thing. I have no more Dystonia as I said and no dyskinesia. I had a heck of a right hand jackhammer tremor and injured my shoulder with muscle cramps from sinemet withdrawal. I also injured my hip and knee before I found a doc willing to help with the cramps more and I find that medical marijuana does help a lot with tremor and cramps. I had never tried it before so was pleasantly surprised.

I went down to 400mg/day from 450mg/day sinemet and then there were the holidays and doing too much. I am now at 750 mg/day comfortably. The thing that scares me is that I almost doubled my dose so I could protect my shoulder. The tremor caught up with me again and I am now a little under-dosed when I was fine on 450 in December. The annoying exacerbated tremor goes mostly away with MM. I am down dosing again and will until totally off a half pill a week barring injury. I'm waiting until I'm done to fix the shoulder. The shoulder feels better but I don't want to have ANOTHER surgery if I reinjure it. I had two previous surgeries on it for unrelated injury.

Theoretically I think a LOT of people could be dosing lower and having less Dystonia and less dyskinesia. It's so easy and we are so desperate to live normally. That little 1/4 pill doesn't seem like it would be bad but it can be as my body says. ALL of my symptoms are caused by sinemet. That should cause pwp's and docs to take notice on how and when they prescribe some of these drugs.

I've made no secret about my dislike of sinemet after my experience. Especially to young people. The effective life of the drug is 5-10 years, tending more toward 5. Sinemet should be a drug for down the road. None of the things you tell me below confirm it is PD. All of the research I have beaten through admits that until you die and they do an autopsy there is no certainty with PD. Scans and neuro exams can't tell everything.

While I think there is merit in trying several meds if you need to, I have a huge problem when docs prescribe meds to counteract side effects from other meds. This sounds like a lot of your changes came really fast to your brain and nervous system. If it takes over a year (from personal experience and research) according to most on this site and what little info I can find in finding how to quit sinemet. Your body takes months to get used to some drugs and get them to a therapeutic level and it takes months for them to quit influencing how everything else works.

Were I in your spot I would research and put some breaks on all the fast changes. Keep changes simple and one at a time so you can tell what matters. There are MANY kinds and classes of drugs that can treat PD without sinemet. Sinemet is a drug of last resort in much of the literature. It causes some very bad side effects. The longer you don't take it the more likely you are to get another diagnosis. After you are "labeled" many docs never question. I was headed down hill fast.

Since I have been diagnosed as PD-free sinemet induced PD symptoms as my body began to need more and more. I'll put a link up here of me before I reduced my dose of sinemet. I put numbers in there as far a dose and time. This was filmed before I found out I didn't have PD. I LOOK like I have PD.

Find a doc YOU sync with, respects you, is very well qualified, is board certified, read some peer reviews and patient reviews. All docs should provide you free of cost a curriculum vitae (an outline of their qualifications and professional/educational experience. Try www.healthgrades.com. There are some pay services that for $20 or so will allow you to look up docs for a period of time for a discount (i.e. unlimited 24 hours for $20) Google their name and check the state medical board for complaints. Even Yahoo has ratings.

You have my best wishes. I hope you find better news. Stick to your guns.

Last edited by d0gma; 07-02-2012 at 05:23 PM.
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