Dystonia in hands can be task specific. Have you ever gotten writer’s cramp? That is a task specific focal dystonia. There’s also a musician’s cramp, which is task specific. It can be so severe that a musician can never play again. Sad day for them if that’s how they make a living. I have typing and writing, task specific dystonia, involuntary finger extension and wrist flexion.
A pain in my right arm was waking me up at night. My right hand would tingle like it was asleep when I washed my hair. I was struggling to type or 10-key. I lost the strength to open easy things like a water bottle. Dr Kumar sent me to be tested for carpel tunnel.
They hook up some wires and use a needle to see how fast signals are along the median nerve and the muscle response. The tests showed carpel tunnel and they signed me up for surgery. The surgery helped things like, my hand “falling asleep” when I washed my hair. It didn’t help with work, ugh.
Sure enough, the dystonia was now in my limbs. I officially had generalized dystonia. It is unusual for an adult onset of dystonia to show up in a nonadjacent body part. For example, someone with blepharospasms (eyes) might end up with cervical dystonia (neck) since they are adjacent. It is sadly typical for a youth onset to have generalized dystonia.
My right hand and wrist were now added to the list for injections. I received injections for digits 3-5, middle, ring and little finger. I find it interesting the injections are done about halfway up my forearm that affect my hand.
Dr Kumar uses a machine with an injection needle that’s hooked up to a machine with contact stickers on me. The needle probes and twists the muscle area until the machine picks up on the spasming location. I think it sounds like white noise old tv’s used to make when there was no signal. The EMG machine, electromyography, is used for all my injections except my eyes and vocal cords.
We now started oral medication to help treat the dystonia. I won’t go into the titrations but here’s where we landed.
- Trihexyphenidyl (Artane) – 2mgs 3/day
- Austedo – bad reaction
- Baclofen – 20mgs 3/day, in addition to the 20/mgs at bedtime for my occipital neuralgia making it 80mgs for the day
Me Myself and My Dystonia 