Join Date: Aug 2006
Okay so where do I belong. Is it Dystonia or EPD?
I'm new here. I don't know where to begin because I am confused by what my doctors are telling me. Before I get into the crux of the deal, let me give you all a bit of history so we're all on the same page.
This all started about 7 or 8 years ago. I started with periodic painful cramps in my legs. At first I thought they were from not enough water, too much walking (I love to walk), or stress from driving. They would hit me during the wee hours of the morning usually to wreck a good night's sleep.
Eventually the cramps got worse, and my left foot started turning in painfully. I did have a clubbed right foot when I was born, and that was corrected surgically when I was a baby. I was actually the poster child for this surgery that is performed around the world today. Anyway , I thought maybe this was my left foot being sympathetic, and I found that the leg stretching exercises that I do often seemed to help quite a lot.
Everything settled down, and the cramps went away for a few years. I didn't think much about them, and in early 2001, I started getting nasty headaches that were eventually diagnosed as migraines. The neuro gave me some funky pills that really didn't do much for me other than make me sick. I found that good old Bufferin did a better job.
Anyway, things settled down, and I was back to my old routine. During this time, I noticed that my left hand was tight, and my neck was very stiff. My pinky especially would feel extra tight, and I would lose occasional control of my hands while playing the piano. I've been playing since I was 8 years old, and I play at the concert-pianist level. I figured I was tired because things would come and go.
In December 2002, I passed out while fixing my sister's computer. I wasn't doing anything special other than loading MS Office, and turned to watch something on the Discovery Channel when all of a sudden I was on the floor. The trip to the ER was uneventful, and there were no signs of anything, although the right side of my face was numb, and my thinking was slow. My speech was fine, but I couldn't tie my shoes, button my shirt, or play cross-hands on the piano. I was then sent for an arterial ultrasound. (A much later EMG showed it was a minor stroke or TIA).
The ultrasound showed normal arteries, and also showed a mass on my Thyroid. The diagnosis was a migraine again for the passing out. The mass, however, was around 3.5 cm in size, and that prompted a trip to an Endochrinologist. The Endo gave me the Technium and Iodine uptake imaging tests, and that showed a solid mass with additional growth. I was sent for a fine needle biopsy of the gland. This proved suspicious, and in May 2003, the left thyroid was removed. The tumor was pre-cancerous, though the surrounding tissue was clear. In the process, they lost two of my Parathyroids, but after two weeks of a mega-amount of TUMS in milk diet, my calcium levels have been normal.
In the mean time, after feeling great for about 5 months, my left hand started tightening up again, and the cramps returned with vengance. They got so bad that I actually had to pull over to the side of the road because they hit while driving. My leg streching didn't help. It was as though no matter how far I stretched, I couldn't stretch enough. I also developed tightness across my chest, and under my ribs. My Primary Care Doctor (PC), sent me for some ultrasounds of my stomach and liver, but they came back clean. He noticed that I was tight across my middle as well, and pulling to one side, and then thought maybe it was my right foot causing problems. The cramps got worse, and I had a hard time getting around. I kept telling him I felt slow moving like I couldn't get out of my own way.
In July 2004, I felt worse. I would lose control of my hands randomly, and the cramps in my legs got worse. One day while practicing the piano, I started getting a tremor in my right hand. I got scared and called my doctor. He checked me out, and put me on Toporal, saying that it was stress, and the Beta Blocker would help. I do have a heart murmer, Mitro-valve prolaps to be exact, and he thought it was that. The Toporal didn't do anything for me, and my muscles continued to cramp. In the mean time, I developed muscle twitching and internal vibrating feelings. He sent me for some blood tests, and my CPK levels were slightly elevated. He took me off of the Lipitor I had started, and they returned to normal. The cramps, stiffness, vibrating, weakness, slowness, and tremor did not go away. He then sent me for an EMG/NCVT. These painful tests showed the slight muscle weakness, but nothing else.
In the mean time, I got progressively stiffer and weaker feeling. Eventually, in May 2005, I ended up with the neurologist I am seeing now. After a very quick visit, he diagnosed me as having bilateral focal dystonia, and without listening to more than 3 minutes of what I was telling him, he put me on Klonopin, and told me to see him in 6 months! He said the only other treatment is Botox.
After trying the Klonopin, which made me feel dreadfully ill and made the my eyeballs twitch, I ended up on Baclofen instead. The Baclofen calmed the spasms, but I was still getting them especially in the early hours in the morning. During this time, my manager also made a remark about me not swinging my arms. He kept telling me I was walking like a robot. I could feel the stiffness in my upper shoulders, and my knees were killing me. Another day, he made a remark about me making a fist. My left hand had completely clenched up to a point of bruising the palm.
While all of this was happening, I could not sleep. This was not only from the worries about what's going on, but also from the internal vibrating. This feels like you've been holding an electric drill then put it down. The vibrating continues 24 /7. I was totally exhausted from this. To add insult to injury, I had to sleep on my arms. I kept thrashing them about during the night. At one point, I nailed myself in the nose, and ended up with a black eye!
My own doctor remarked about my stiffness, and he noticed cogwheeling in my arms. I really didn't feel much better, so I ended up back at the neurologist. In September 2005, we discussed what was happening, and we tried Sinemet 25/100. Within 20 minutes of the first pill, I felt better. After a week I felt terrific. For the first time in nearly a year, I could play the piano somewhat again. It was a total miracle.
By November 2005, things got worse again. My left arm froze up, and wouldn't swing properly. My Sinemet was increased to 4 x per day from 2x perviously. This helped quite a bit, but I was still hitting myself at night so the neurologist gave me Sinemet CR 250/150 for the evenings. This helped calm the eye-bashing, and for the first time in months, I really enjoyed a full nights sleep. This mix worked fine for me until May 2006 when the cramps started all over again. This time he added Mirapex 0.5mg, which has helped.
Now after all this, this is where I'm confused. My PC says this is classic Parkinson's or very Parkinsonian with the cogwheeling, ridgidity, slowness, tremor, and cramps. The neuro keeps saying dystonia.
This week I saw the neurologist for a follow-up. He asked me how things were going, and up until Tuesday this week, I hadn't had a cramp. Tuesday was a bad day. I've been vibrating again inside, and my left foot got stuck on the carpet when I got up to pick something off the office printer, and ended up tripping. This time I bruised my little toes (I thought I broke them because it hurt so bad). Also add into this mix, increased urination. I was going nearly once an hour. If I held it more than two hours, like at night, the desperation was so bad, I thought I would wet myself! Tuesday night (Wednesday morning) also brought on cramps for the first time. He has increased my Mirapex to 2x per day, but doesn't want to go any further at this time. He says that I had a flair-up, and they don't know what causes it.
The neurologist keeps saying it's Dystonia, but other people have noticed my increased mobility and overall better movements since taking Dopamine. My PC noticed this as well, and still says Parkinson's. So I'm confused. I know that Dystonia can be caused by Parkinson's, but what's going on here? I'm really confused. What is it - a combination of things, or one or the other?
Well that's me in novel. Sorry for such a long post.
Music is my soul. If I ever lose my music, I will die.