Just an update. Still no luck finding a doc with experience. I am down to less than 1/10th the sinemet I was taking and doing BETTER. I won't sugar coat it, it's been sheer ****. If I didn't have a VERY powerful motivation there is no way I would put myself through this.

I am down from 525/2100 minimum per day with additional 1/4 tablet (25/100 sinemet tablets) boosts every 30 minutes for most of the last hour of 3 hour dosing) doses totaling minimum 50/200 mg more. I am on less than 1/10th the sinemet I was taking and feeling better, less symptoms every day, less tremor, better balance, bet5er walking, almost NO more dyskinesia (I’ll explain), no dystonia. Essentially no Parkinson's. I do not suggest ANYBODY do this without a doctor's supervision, nor do I suggest depending on your local ER to save you because even with instruction they will not be equipped. Your goal is to live with or without PD so don't take any risks. (from 12/23/10 to 06/10/11).

I also suggest recording your office visits either on a cheap voice recorder or just set your cell phone in an outer purse pocket. You would be surprised what you pick up later AND how different your records and the doctor's dictation differ from what happened in the office. I also suggest you request copies of ALL of your medical records. Several doctors made some very big errors in their dictation later and this went into my personal file. This is not changeable! So your diagnosis may be effected by personal bias or honest mistake. Some of these docs are honest hard working guys that make mistakes and some are perhaps experimenting (for good or "research" purposes) on their patients because they don't understand this disease.

Go look it up. Sinemet is useful in treating PD for 3-5 years before problematic side effects start. There are so many alternatives to try first like exercise, forced exercise, other drugs, meditation, massage, PT, and hundreds more. Sure you may end u on sinemet anyway but you put a foot in the door for DBS when you take that first pill. I was so close.

I'll post a video I did about a year ago when I thought I had PD. Look at the unexplained way dystonia can be instantly gone by doing thing a different way. In one case walking backward. Doctors and the medical community don't understand how sinemet works, just that it does. They don't understand how aspirin works exactly. Watch and ask yourself, is there another choice before I take sinemet.

I read with great alarm some posts about dosing sinemet. I was in that 1/4 tablet club and getting worse/needing more. Why suffer and move like lava when a pill and a few minutes gives me back ME and I can LIVE?! Because you're possibly falling into the same trap/dream I did. Guilt-fear-hope-why me? And this is some powerful suffering, I get it.

I've been de-toxing on my own with advice from my doc who admits I am a novelty. Nobody knows what to do, how to taper, what to do. I've gone through worse horror since starting detox 12/23/10 than I ever did when I thought this was PD. I essentially have to underdose, suffer, go glacially slow, insane injuries from cramps, and horrifying pain.

I do have a meds alert dog or I wouldn't have been as brave. The ER gave me Valium ONLY. Back to doc-I need direction. This is NOT a fast process and you need POWERFUL motivation. You can go in off meds (ONLY IF DOC OKAYS) and be observed and you should DEMAND to do so if safe. PD is diagnosed based on our reaction to meds. My point is sinemet caused ALL of my symptoms. Unless your doc is good, open minded, and new now and then maybe without a full history. Are we wed to our diagnoses either by docs or do we become so personally wed we would deny the announcement of wrong diagnosis?

According to the literature this lack of diagnosis of NMS/DAWS and treatment even though I took printouts from NIH and CDC with me is what kills people. This is like a dirty secret. If Dystonia and Tremor are symptoms of thousands of diseases other than PD (treatable problems, diseases, benign conditions, curable issues) how come nobody but me is getting "GOOD NEWS?"

It's torture and people die; they have jobs, lives, kids, angry spouses, and feelings that can't be all stopped while they under dose sinemet for months and go through the pain and most terrible frustration in the world. Can taking the lid off the toothpaste really take 10 minutes? Yes so I just left it off for a while or used my chin. Most people think you're nuts. Still in the back of my mind I had that bail out. If I need to do something really important I'll just take some sinemet and poof magic it will wear off.

So my doc suggested putting me in rehab for a week and getting me off sinemet. when he returns from vacation. Since Medicare will never pay for that I thought I might try at home to do something safer but about the same time frame.

There were several days just before Memorial Day that I experienced dyskinesias at times when my meds should be wearing off. I had no idea how to treat that so I expressed some serious concern to my doctor. I ended up overdosing several times in a row on barely any sinemet. It seemed to me I was starting to make some of my own dopamine or I wouldn't be overdosing at a time 2-3 hours since my last dose (when normally I would be wearing off). Now seemed like a good time to reduce dosage.

I spent the next week on very little sinemet over Memorial Day as a result. I took 1/2 (25/100 mg regular sinemet) Saturday to Monday. It was the worst thing I've ever gone through including two shoulder surgeries, two back surgeries, cancer surgery, and a knee surgery. I had a jackhammer tremor that made me really consider driving my car onto my hand to get it to stop. (joking sort of). I was moving so slow that I had to stop wearing underwear-stuck with XL boxers b/c I couldn't go to the bathroom fast enough if I had to move the underwear. Thank goodness I have a helper.

I ate with my hands since silverware was impossible, drank through straws, couldn't drive, use the computer, read, garden, walk, or much of anything. I realized Tuesday night after skyping my parents that I couldn't stand up from my chair. That scared the heck out of me. My function decreased over those 4 days to almost total immobility. I also thought 15 minutes like usual and I would be back. The meds took 90 minutes to kick back in so I could stand up. I had a friend waiting to take me to the ER but I thought I could solve my issues better with instant access rather than waiting hours at the ER.

The next day I went back to a higher dose but still a decrease to (1 25/100 sinemet er & 1.5 sinemet regular to 1 25/100mg sinemet er and 1 25/100mg sinemet regular). I'm going to stabilize at this a couple of weeks here. See if there are times where I have dyskinesias and hope my body is kicking in more natural dopamine. When that happens it would be time to go down again. I don't know what tomorrow will bring but we'll see. I am very determined to get off sinemet.

For those that can wait, try, do your research, don't up that dose until we find out a little more about this filthy little secret. I'll post some video’s shortly. Bear with me. I'm a bit at a deficit today after no sleep but a GREAT day yesterday. I felt for the first time in 10 years like nothing was wrong with me at 11 pm I was up cleaning the kitchen. I’ll take it.

Thank you for sharing your terrible experiences, and warning us to be careful when considering taking these powerful drugs and the side effects they produce.I think you are so brave to continue to wean yourself off Sinemet, and I wish you all the best in coming off it all together. It's so sad to think that you were mis-diagnosed in the first place. Ladybird.

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]