I've been told as you can see from some older posts that I do not have PD. I do not know what I have if anything. I'm told I must be off sinemet to be diagnosed. Kicking sinemet is MUCH MUCH harder and painful than I could have dreamed. I moved from Ca to Tx last August and lost my wonderful doctors. I am looking for help-advice-direction and thank you in advance.

I just went through a second bout of bone and joint pain in my elbows and forearms that made it impossible to move my hands for 6 months. The first round my CA doc tried a Medrol dose pack and oxycontin with no effect. I often could not eat, drink, or use the bathroom by myself. If any PWP's have similar experiences to my list below please weigh in.

I have few and mostly no PD symptoms at night when I take no meds until this last month. I think my issues with cramps, pain, and sweating are related to sinemet decrease but am not sure. If anyone knows of other drugs please let me know. Propanolol helps (adrenaline blocker) with shakes of all kinds.

The questions: Has anyone experienced:

1. Extreme elbow and forearm bone and joint pain? Each bout lasted about 6 months with sudden onset and resolution. I woke up one day and couldn't move my hands last year for the second time. I woke up 3 weeks ago with the pain gone mysteriously leaving me to move my hands in wonder for the first time in months.

2. Joint dislocating cramps? This is not dystonia. I haven't had dystonia in 3 years since I first reduced sinemet. My shoulders in particular will clamp to my side and actually cause the joints to pop and creak like a rusty door. As in other people hear it across the room. The worst cramps are left sided. My left arm freezes into a claw and left calf freezes my whole leg. All PD-esque symptoms are confined to right side. I have bilateral cramps in my neck, hips, and feet. Valium makes all of this go away for a few hours. No other muscle relaxers I tried work well except for Valium. Frustratingly no doctor will prescribe the Valium in small town Tx. None of the pain management docs in town are taking new patients. I would move but I moved here to be near my parents. We need one another so I must travel for now with great difficulty.

3. Violent seizure like fully body shakes? I can stop by stretching then relaxing and concentrating or contorting into a certain uncomfortable position. This is not like stopping a resting tremor by moving the limb. These affect full body and are a worse version of the giant right hand jackhammer I experienced in 2011. The giant hammer spontaneously resolved after a few months. It's like a grand mal seizure that I can make go totally still with a stretch. With monumental mental effort I can make it stop for hours if I have the ability to keep up the concentration. If I could figure out what starts or stops these big problems life would be so much easier.

4. Huge sharp full body jerks. These are one huge jump and are significant enough that I fly up several inches off the bed. They rarely happen out of bed and are not associated with sleep.

5. Intense sweats and intolerance to heat. I have my thermostat set on 59 to keep it 62 in the bedroom-this is ridiculous and expensive.

Does anyone have suggestions on what kind of doc to go see? I have had terrible results. I literally just got a call from my PCP saying two more referrals for pain management refused to see me. ugh! The last neuro I went to see here said he didn't know where to put me so didn't feel comfortable treating me. That left me going out of town 2 hours' drive to see a neurologist. I've gone from too many pills to none.

I have a tentative schedule for a DaTscan in a month. I would love feedback on if I should have it done. I am leaning toward No. I read they cannot distinguish between different kinds of PD. If I have benign Parkinsonism or nothing then I gain no info if I understand correctly?? Pasted below it says the scan helps distinguish between a few select disorders and is still not a PD diagnostic. I just started reading today so I know I don't have the full story. I am UBER-sensitive to dyes and was hospitalized after receiving Cardiolite contrast for a nuclear stress test and am allergic to topical iodine (migraine and vomiting for hours, I was never able to get on the treadmill) My insurance is Medicare only-hence I must pay for 20% of the scan. I was told it was very expensive. The below paragraph makes a DaTscan seem of little value in this case.

At http://www.pdf.org/en/science_news/r.../pr_1295578745 "Dr. Beck: DaTscans cannot diagnose Parkinson's disease. These scans are used to help a doctor confirm a diagnosis. DaTscan has been used in Europe for over 10 years, where more than 300,000 have undergone the procedure. The results of a DaTscan can be used to help rule out other diseases that may have similar symptoms, like essential tremor, especially for individuals early in the course of their disease. However, there are several other diseases, multiple system atrophy (MSA) or progressive supranuclear palsy (PSP), which can also produce a loss of dopamine in the brain. A DaTscan cannot differentiate between those diseases and Parkinson's."

In the last 3 years I decreased sinemet from 3000mg per day to a current 4-500mg per day. I was down to 475 mg/day last week and suffered another setback. I woke up to intense bone pain, cramps, and violent full body trembling. Most neurologists agree that my current level is too high still. Unf my ex-neuro was a quack who also tried to force me into a “surgical intervention.” I emerged from what several doctors called a thorough trashing of my neurologic systems to a very painful world of muscle cramps, intense sweating, paralysis, bone and joint pain, and weird stoppable tremors. Since I last posted 5 more neurologists confirmed I do not have EOPD. Nobody really wants to treat me because I don't have EOPD and they don't know what category to use for me.

The biggest evidence in 13 years that this is not PD is a decrease of PD symptoms as I decrease sinemet. I left a very abusive marriage and the enormous stress reduction caused an improvement over time.

I've been to psychologists, addiction specialists, neurologists, pain management, gp's, and the ER with no answers. I've been accused of being psychologically addicted which is maddening. shriek/pulling of hair! I would give anything to stop this drug and have fought for 3 years. I think docs do not realize that 3000 mg is a staggering amount to be reducing from to start. I have not found a single soul that stopped the drug except for a few isolated older mentions here on this forum. One of those passed away over a year ago from other causes.

I only take sinemet between the hours 9 am-6pm. I was taking it every three hours 24 hours a day (using ER). Outside dosing hours I do have a couple of hours of wear off at night where I shake all over. I noticed that it is much easier to decrease by eliminating doses completely and spending more hours off meds. So I now take only 4 doses a day and no ER sinemet. ER sinemet metabolized very differently from dose to dose and I ended up underdosed most of the time. Regular sinemet is more predictable and more effective for me.

Since I started reducing sinemet I've tried 10+ doctors advice on how to reduce dosages with disastrous results. The results of rapid increase left me nearly totally paralyzed several times. Unf this is not the type of paralysis that goes away quickly. After increasing my dosage back up I must wait days or weeks to regain function then start over again.

Apparently my body is starting to make it's own dopamine again because after several weeks or months I start to be consistently overdosed with severe dyskinesia. I respond by reducing one dose 1/8 of a tablet, wait a week, reduce another dose 1/8 tablet etc. Anything more = disaster. It is in this way that I went from 3-4 pills per dose around the clock to an average of 1.25-1.5 per dose 4x per day.