Hello everyone!

I've been a lurker over here from time to time, and I've decided to join in the fun.

I was diagnosed in November 2006 with an atypical form of Parkinson's. I have some, but not all the symptoms, and my current neuro is a pleasure to work with.

This nasty road started officially in August 2004, but I was dealing with cramps in my feet and some stiffness prior to this. I would get these nasty awful cramps where my feet would feel like the toes were turning in and the big toes would stick straight up. They would happen late at night and usually in the early hours of the morning. Other times they would hit me when I was driving, and I ended up pulling over to the side on the interstate a few times.

At first I blamed the cramps on not drinking enough water, or they were caused from too much bike riding, my too low a car seat, or anything else that could cause the cramps. The stiffness too I thought was good old Arthur visiting me since I live in drafty cold New England.

In May 2003, my left foot decided to turn in more than the right, and cause more pain, but I was born with a clubbed right foot that has been surgically corrected, and thought perhaps the left foot wanted to join its partner. At this time, the right foot decided to try to turn in, and my second toe rode up on top of the big toe. No matter how much I tried those little pads between the toes, they didn't help straighten out the right second toe. {1}

In July 2004, I was at my sister's wedding, and the spasms hit my feet again. I could barely walk, and had to find a place to sit down quickly. The weekend after the wedding, I was practicing the piano like I always do when I developed a tremor for the first time in my right hand. This was when I got scared and called my PCP. I also was having a difficult time getting out of chairs and other low seats like my car or the couch. My arms and legs were so stiff I felt I couldn't stretch them enough, and I was so tired that I could sleep forever if I was left alone. I also couldn't play the piano without difficulties as well. I am a Classical pianist with over 35 years of training. I never went into music as a career, but it has remained the focus of my waking hours when I'm not working. I was becoming depressed because of this.

After some x-rays, an MRI, blood tests, and the EMG, he concluded that the Lipitor I was taking raised my CPK levels. He had me stop the Lipitor, but that didn't stop the tremor and the cramps. I ended up at the first neuro in June 2005. Within 3 minutes of the 13 minute visit, he handed me a brochure about dystonia. He didn't listen to me about the stiffness or the other things that were bothering me. He only picked up on the fact that I play the piano.

He said there's no cure, but I can go for Botox treatments if I wanted them. I looked at him puzzled because his diagnosis was so fast. No matter how much I tried to tell him about the other things, he kept saying it's just dystonia.

Well I didn't go on Botox, and he gave me some Klonopin to relieve the spasms. This did absolutely nothing for me, but make me feel worse. He then tried Baclofen, but that didn't do too much either. Eventually, in the late fall of 2005, I asked him if this was dopa-responsive dystonia, seeing that nothing else was working. He gave me the Sinemet to try, and within an hour after the first dose, I felt 100% better. I mean the muscles stopped aching, the hands and feet stopped cramping, and the tremor stopped! I could even play the piano again! I was in heaven!

When I told him at the next visit, he didn't say anything and still insisted it was dystonia. Well things got worse, and he ended up increasing the dosage to help with my arm swing, which had slowed down. I was also tightening up again, and my left hand was making a fist so tight that I had bruises in the palm.

I still had a gut feeling that this isn't dystonia, and I insisted on a second opinion. After a couple of messed up reports to my PCP, I was allowed to go to whomever I chose. So, now I am over at the Lahey Clinic and with one of the best doctors on the staff. She asks good questions, and is willing to listen to me if I have questions.

Over the past year since I first saw her in November 2006, I've gone from Sinemet 25-100 , 4-1/2 pills per day, to 6-1/2 per day last week because I was going off during the night and feeling miserable the next day. We had tried Mirapex initially with little results other than making me search for light leaks at the most inopportune times.

In April of 2007, she put me on Amantadine, which helped me so much with my fatigue, and this is where things are now. I take the Amantadine 3x per day, which was titrated up from 1 to 2 to 3.

This is both frustrating and discouraging, but I find that if I stay positive and busy I can deal with it. I work full-time because I want to (and have to really) because it keeps my mind fresh. I have good days and bad days, so I take the good periods in, and ride out the bad ones the best I can.

John

{1} I noticed that when I'm off, my right foot begins to pull in more, and the 2nd toe pulls in tighter over the big toe.