For as long as I can remember, I have always had terrible muscle spasms in my legs. They would usually occur during soccer games, swimming lessons, or in the middle of the night. They were absolutely excruciating and I got them on a pretty regular basis. As I got older, the spasms in my legs got worse and worse. I recall one day after a basketball game, having a muscle spasm in my calf so strong, that it was pointing my toe. My foot was stuck in that plantarflexed position for an hour before it actually started to subside. It looked like one of my right leg and foot belonged to a ballerina on pointe. It was ridiculous and I ended up having to sit the next basketball game of the tournament out.
Ever since kindergarten, I would always get these terrible cramps in my right hand after writing, even if it was only for a short period of time. Once again, they were very painful, but I always thought that they were normal and that everyone got them constantly.
Starting in June 2012, I started getting these muscle spasms in my back and neck that made moving or twisting extremely uncomfortable. I would get these large knots in my muscles and within minutes of massaging them out, they would form again. My hand therapist would use kinesiotape to help relieve some of the tension. The tape worked really well, but it would not stick to my back well, so within a day, it was useless. She blamed my back spasms as a result of overcompensating for my injured fingers and wrists, so no one questioned it.
Then in December 2012, the muscle spasms became intolerable. My pain management doctor began giving me 30 trigger point injections into my back and neck every three weeks, which just barely took the edge off. In April 2013, the muscle spasms became so severe that they would contort my feet, ankles, and toes into unnatural positions. This lead to a diagnosis of dystonia that was believed to be secondary to Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome. I would be admitted once for a week every 2 to 3 months for three years to break those contractures that eventually came to affect my vocal cords, hands, arms, and abdominal muscles. Any muscle can and is affected by this. Even eyelids. We tried Botox injections in my leg muscles, but the results were pretty unremarkable, as I took two to three times longer than the average patient to show even a slight loosening of my muscles.
I have been on almost every muscle relaxer under the sun. Sinemet, Dantrolene, Baclofen, Klonopin, and Flexeril to name a few. Some help a little, but most didn’t even affect me (except for maybe their horrible side effects!). We have recently tried a five day course of high dose IV steroids. No change.
I have seen pain management doctors, physical medicine and rehabilitation doctors, neurologists, a movement disorder neurologist, physical therapists, geneticists, and orthotists. We are even bringing a neurosurgeon on board this month to help us. All of these people working as a team trying to find an answer to my dystonia that has been very refractory to standard treatment.
Which leads us to the present day January 2nd, 2016. I have been in a wheelchair full time for 49 days at this point. It has been 7 weeks since I last moved my feet, ankles, and toes. I have had a lot of testing done recently and a diagnosis is in sight. In my next blog post, I will explain what we think this neuromuscular disease is, how it is diagnosed, and the treatment for it.