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.