I recently found out after 10 years I do NOT have PD. I am trying to get off Sinemet after being on it for 5 years and having a very hard time. I can’t find a single doctor with any experience in getting people OFF Sinemet. The doctor that diagnosed me as not having PD has been backed up by 4 other neurologists. While I have great respect for him I am very worried about NMS or DAWS.
Since he admits I am a bit of a novelty I am very concerned about his plan to get me off Sinemet in a week. I’ve been tapering very slowly due to debilitating muscle cramps that have torn muscles in my hip and knee. I am afraid this rapid detox while attractive might be fatal if I am living on the edge of DAWS as I suspect I have been for some time.
I would feel much better if I knew of a doctor with experience in weaning people off sinemet. Do you know of any such centers or doctors? I live in central California but can travel.
I can certainly emphasize with your need to wean yourself off of medication that you do not need. This process takes time and patience. In my research, I have found a wonderful resource who has helped many people wean themselves from one medication or another. He is Randy Mentzer, a compounding pharmacist. Randy is not a doctor, but he explains that doctors are not traineD to help people with such challenges. This is precisely what compounding pharmacists are trained to do. I would thus suggest that you consult with a compounding pharmacist.
A compounding pharmacist will compound a medicine with – say – a 95% potency which you can take for a period of time. If there are no side effects, the potency will gradually be reduced over time – little by little – until you need take none of the medicine. this process may take as long as a year or two. If there are reactions to a reduced potency, Randy will jump up the potency and then reduce it more gradually.He works closely with doctors as he changes the potency of medications for patients. You cannot make these reductions by cutting pills down.
In summary, you cannot go cold turkey and you cannot get off of the medication within a week. It takes time and patience to wean yourself but it can be done. I suggest you find a compounding pharmacist in your local area and get a consultation. Randy also does phone consultations if you are unable to find someone locally. His e mail is: Randyrphconsulting@gmail.com