(I reposted this from the General Health forum, and I changed the title a bit). I don't normally double-post because I know it really bothers forum admins.
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.
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), biking, 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. My longtime orthopedic surgeon said that there was some regression happening, and my primary care doctor thought that this maybe some of the problem with my left foot wanting to turn in especially since the exercises helped.
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. This is more of a hobby than a vocation, so it's not as though I make a living out of it, but still the loss of my music would definitely mean I would die very soon.
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-handed 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 in the legs 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 stretching 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. The pains across my middle were so bad that all I wanted to do was to curl up in a ball. I also could barely lift myself out of my chair on some days. One day, tremors started happening in my hands along with muscle twitching. 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 and twitch.
In the mean time, I developed more muscle twitching and internal vibrating feelings, my neck shoulders became very stiff. He sent me for some tests including an MRI to check for arthritis in my neck, or some other trauma along with some blood tests. My CPK levels were slightly elevated. He took me off of the Lipitor I had been on for four years, and my CPK levels returned to normal.
The cramps, stiffness, vibrating, weakness, slowness, muscle twitches, and tremor did not go away. He then sent me for an EMG/NCVT. These painful tests showed slight muscle weakness, but nothing else, and that was attributed to the Lipitor.
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. He sent me for yet again another MRI, and another EMG. It was this EMG that showed the affects from the TIA back in December 2002.
After trying the Klonopin, which made me dreadfully ill and made the my eyeballs twitch, I ended up on Baclofen instead. The Baclofen calmed the spasms but didn't eliminate them. I was still getting them in the early hours of the morning, and many times while driving.
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, constant pain, and stiffness. This internal vibrating feels like you've been holding an electric drill then put it down. The vibrating continues 24 /7 even while sleeping. 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 noticed some 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. His thinking, as well as mine that it could be dopa-responsive because my dad's family is originally from Eastern Europe. I mentioned Parkinson's but he brushed it off. Anyway, 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 nearer again to what I was used to without the stiffness and halting in my playing. It was a total miracle.
By November 2005, things got worse again. My left arm froze up, and wouldn't swing properly. My boss noticed it at first, and remarked that I was walking like a robot. My knees were also killing me, and my left foot dragged some. The neurologist increased my Sinemet to 4 x per day from 2x previously. I asked him if this was Parkinson's again, and he took offense like I was questioning his initial diagnosis of Dystonia.
This Sinemet increase helped quite a bit, but I was still hitting myself at night so the neurologist gave me Sinemet CR for the evenings. This helped calm the eyeball-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 along with the stiffness. This time he added Mirapex 0.5mg, which has helped.
This week I saw the neurologist for a follow-up. He asked me how things were going, and up until Tuesday 8/8/06, I hadn't had a cramp since he gave me the Mirapex back in May. Tuesday was a bad day. I've been vibrating again inside. To add insult to injury, my left foot got stuck on the carpet, and I tripped when I got up to pick something off the office printer.
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 the Sinemet and Mirapex. My primary doctor 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?
Sorry for such a long post.