Hi Dogma
Thanks for all the Info,The more I research the more I am convinced I donīt have PD more Like essential tremor.
I couldnīt view the video How do I view it ??
much appreciated I unfortunately donīt live in the States.

Candice8,
did a password area come up??
password is pd

it only came up on one of the links thanks Candice

I will relink when i can type. sorry. yes password field should come up. enter pd

try another browser like firefox etc

candace,

i'm reposting links that didn't work and typing slowly so x fingers. it may also be your browser. ie8 and windows7 seems to have some issues with vimeo. a different browser like safari or firefox seem to work. you also might have to change privacy settings to temporarily allow a pop-up because you have to enter the password. if ur browser is set to block pop-up's or always use https, those might be the culprit. be sure and reset security or make it temporary after you view it. you could also copy and paste the physical address in your browser's URL address field. I pasted the url's directly into the note and didn't use the link widget here. maybe that will help.

since some of the music and content is not my original this saves it from being stripped of copyrighted material. it also assures i am not stealing it, claiming credit, or getting any gain. sorry for the inconvenience.

I meant to tell you that there is a benign parkinsonian tremulousness that manifests mostly in 1 limb and never progresses. Hence updosing would never be necessary. It is remotely possible I have this or one of many disorders or nothing. Matching up 1-3 symptoms and having a doctor say that constellation is PD just doesn't seem right. If you read about dystonia it is one of the 3 most common movement disorders and is likely to get a PD diagnosis. The problem is MANY disorders have dystonia as a symptom.

my dystonia when at the highest dose of sinemet (sorry it's long and dry-meant for documentation)


dystonia & pd info



my dad's favorite - who famous has PD and my severe dyskinesia at the last third


password for all is pd

the password window may say this is a private video--and have an access button. enter pd in the blank and click access. These were made for different purposes so forgive some small repeats of clips. Again I do not recommend the denver dr.

I have a friend that has been on sinemet most of 23 yrs and has weaned herself slowly off of it using liquid sinemet and slowly lowering the doses. She depends completely now on fava tincture/ fava sprout balls and mucuna capsules . Have you tried mucuna in capsules? Swansons supplement catalogue sells a capsule /easily taken that seems pretty good. Fava Sprout balls are easily made (look under last post of Aunt Bean on Four Acres to grow favas...I wrote in recipe. Just have a g6pd blood test done first to make sure you are not deficient in the enzyme to assimilate them FAVISM is rare but dangerous. Good luck to you....keep going slow to reduce the sinemet

Hi,

My name is Paul Cook, age 53, diagnosed with Parkinson's in 2006. I took Sinemet for 7 years and migrated to Sinemet CR. Last year I saw a Professor of Neurology in Singapore who said that I did not have Parkinson's and to reduce the medication. I found this diagnosis hard to believe but, a second opinion has concluded the same.

How do I taper off the Sinemet? The Neurologists cannot tell you how, I have to figure it out myself.

I also feel that if I feel unwell I think it is due to the Sinemet not Parkinson's.

Thank you

Paul Cook




QUOTE=d0gma;774674]After 10 years of thinking I had EOPD I went to a new doctor off meds and after many visits and several months of "tapering" I find that he is right. I had to do this taper by myself, injured myself, and am still working with what to do now being off sinemet. No doctors have any practical experience. I skirted on the edge of NMS or DAWS for weeks before anyone would listen to me despite the clear documentation. I can now go without sinemet but everything is in slow motion. I have a divorce to prepare for and must hire help to do even the basics. Does anyone know of someone else that has gone off sinemet permanently? How long until some degree of normalcy returns and I can quit taking small doses to get some function back.

I'm pretty angry since all of my PD symptoms were sinemet side effects. There has been no progression and apparently no PD. I had one neurologist recommend I have immediate surgical intervention or I would be in a nursing home by age 52. He suggested DBS and it was beginning to sound like I wasn't going to be given a choice despite seeing a psychologist that was a practicing partner of his. She disagreed that I needed psychiatric medication. Thank God I didn't let this idiot do brain surgery and get tanked up on MORE unnecessary meds that would have clouded my judgment.

This has to be the best news in the world but now I am stuck taking sinemet, a drug I never wanted to start and now don't need. Does anyone know of any docs with experience? I can't find despite some intense searching. It also makes me wonder how many other people don't have PD and are experiencing horrible side effects from sinemet attributed to PD when they are not PD. I can't be the only one.

I've been to 3 neurologists, 1 chemical dependency doc, 2 ER's and nobody has any experience despite a wealth of literature on the net with NMS or DAWS or the aftermath of sinemet. Will my brain start making dopamine again? Have the receptors been permanently altered? How to proceed once I've broken through the "need" to have sinemet and am no longer totally debilitated and injured by horrifying cramps. My function is minimal and so slow as to be infuriating. I wish I had the luxury of time to equilibrate but my ex who didn't want a sick wife won't allow that as he raids accounts I worked my career to create.

Thanks-best wishes to all. I suggest anyone that ever had doubts see a new doctor - off meds - if deemed safe to do so in order to determine if the "system" to publish and test especially on young onset people has lead them astray. I've spent the last 11 years as a test lab rat given all the meds too dangerous for older patients because I was stronger or unique or the only young onset patient the doctor had. This extended to being accused of being mentally ill when I asserted my own opinions about treatment. This last push to get off sinemet was spurred by the most recent accusation that I was mentally addicted to taking sinemet. I never wanted to start this drug and was talked into it by the same idiot that wanted to do brain surgery on me. This "mental" avenue always seems to be the method when a patient advocates for themselves. I've been accused of inventing side effects and symptoms even though well documented. I beat cancer 20 years ago after being accused of being mental about my symptoms. Thank God I found a doctor then that would do a simple ultrasound. Listen to your body-if you have doubts get another opinion about any treatment.[/QUOTE]

try this source, you need medical advice since there is some risk. that's my opinion and all i can say.
a response may take a few days.
you can search the thread.
http://forum.parkinson.org/index.php...sk-the-doctor/

**

Can you describe what you went through trying to quit?

I titrated up to 2.5 pills (25/100) 3 times a day and back down to 2-3 tabs per day total of Sinemet. It was not a fun experience. I reduced the Sinemet and introduced cannabis for 90% of the symptoms I was dealing with. Today, I dose with a one to one ratio of TCH/CBD (micro doses) as needed (4-5 times per day). It works wonders! One to one is an seemingly an important ratio for neurological issues. I tried reducing the Sinemet completely but started to feel a big sense of gloom and doom with Parkinson's monsters rearing their symptomatic heads. Unlike you, I do have PD, but like you I feel that the powerful effects of Sinemet may do harm long term. With the "honeymoon" phase, I'm just trying to take as little as I need to get by.

I would like to see if detoxing, changes of diet, exercise, etc, add to the level of natural dopamine but since I am taking it in synthetic form, I don't know if it is possible. To do it all over, if I were to get diagnosed I would stay away from anything synthetic and concentrate on naturally getting the body and mind to mend from whatever toxin I had exposed it too through diet (healthy gut microbes), exercise and cannabinoid treatment.

Cannabis is not for everyone but the side effects are pleasant if not anything else. It's a new field. Talk to your colleagues and my guess would be they would frown but there are some doing legitimate research. Anecdotal reports are numerous and favorable. From one PD patient here, it helps more than anything so far.

Keep us posted. I would love to see you get off of it and close a chapter in your life that others are stuck in. I would like to hear from DoGma as well to see how he is fairing.

Best of luck!

Over first year after surgery on brain cyst causing my Parkinson/dsytonia I went from 1.1gr total levodopa to about 750 too quickly after surgery and was like immobile zombie for a while. The I did slow taper, scared of withdrawal and kept reinstating because of side effects. Last month did a more abrupt cut. Now on 250.

What I figured out was that problems I thought the medicine were causing were caused by fluctuating levels of medicine. So the upswing and the downswing were the worst parts. I'd not realized how much parky and mental symptoms of illness can mimic the effects of fluctuations. Thus far big reduction a few weeks ago very helpful. But remember, I don't have actual Parkinson disease and rapid reductions can be dangerous.

In recent weeks I've had trouble getting started/stiff in AM. These horrible nightmares where I'd wake up but be paralyzed unable to move. Plus twisty stiff and pain as I'd not had prior. Also mentally sloooow. But these are clearly passing and I'm better than I was. Also changing from taking meds every three hours to three times a day makes me feel way way better.

MJ extracts may be useful in neurology, certainly theres good science behind this is based on animal and lab studies and theories, not high quality studies w/people. I tried as an teen, didn't like it.

Despite much research theres nothing that can change the underlying progressive nerve problem in the brain. So treatments are all for symptoms. If you've found something that works for you that's great.

I had intense reactions to nictotine, benadryl, other compounds. For a while I was smoking to treat the dyskinesias/mental fog even though I wasn't craving (doctors orders actually). I had a big crash with a quit. Gum/patches didn't work as well. I'd not smoked in years before illness then relapsed big time.

Also, as regards levodopa, it an organic compound which is a normal metabolic product produced by the body. In the brain it turns into dopamine which is the exact molecular structure/equivalent to the dopamine your brain makes. I don't think it causes brain damage as in making underlying Parkinson's disease go faster but the side effects can sometimes be worse than underlying disease. Big rock and hard place, usually many years after dx.

You say you are in "honeymoon". Do you mean by this that levodopa it is working well for you but you are scared it will hurt you or make you dependent? There actually is a lot of research on that in humans. Large body of evidence. Broad consensus among movement neurologists that levodopa does not cause underlying progression of the disease. Previous ideas of harm debunked. Those idea were heavily supported by big pharma.

Personally I think I suffered from not being able to distinguish medication effects from side effects, eventually. However, the benefits of the levodopa, before I got the fluctuations, were amazing and my life was better for longer because of it.

I've also had great help from movement/dance/physical therapy. PTs vary highly in quality. I think Feldenkreis and Alexendar techniques classes have been very very helpful and they work at sort of problem with movement integration which we get.

Thanks for sharing your experience!