Dystonia

[livingwith]

For the past 7 years I have lived with a condition that no doctor could give me a diagnosis that is untill this past week.
It all started one morning when I awoke late with the symptoms of what appeared to be a stroke I was hospitalized and was subjected to numerous tests such as MRIs,MRAs, EEGs, blood tests by the doctors and then to have them all come back normal. I have seen several specialists to have them all tell me, “I don’t know what is wrong, it could be migraines or even...Read the full article

[Tinkerbell]

For many years I was told, since doctors couldn't give me a better reason, that what I was experiencing was epilepsy due to a head injury I sustained in my teens (car/semi/my head). I am now 43. The condition never completely debilitated me until recently. Most of my recent 'bouts' were brought on by toxic smells, would last moments, I would rest a day or so and be fine. The symptoms only presented themselves during the episode and then I would go back to the functioning body I have always known. In August 2007 a toxic smell again triggered the twisting of my left side, jaw, tongue, etc. and I anticipated that life would follow the same path. Two days later my body began spasming so violently I ended up in the emergency room and spent the month of August having tests run and rehabilitating. I have been on short term disability since then and awaiting word as to if my Neurologist and Neuropsychologist are going to release me to return to work.
I, like you, was so relieved to know that there is a 'clinical name' for this and now I struggling with understanding what that means for how my life will be forever changed. I wish I had something of worth to offer you, advice about meds, exercise, anything but I don't. What I do have to offer is the comfort, for whatever it is, that you know others are new to this path too.
I have read a few other message boards have not posted anything but something about yours spoke so honestly to how I am feeling, tonight and this new knowledge about my body. Thank you for posting and best of luck on your journey.

[mustang_girl]

Hi, I too have dystonia limited to the face (technically oromandibular dystonia). Mine affects my ability to open my jaw. And, like you, I was misdiagnosed several times, told that I had TMJ or that it was "all in my head". One neurologist actually told me that I did not have dystonia because "people with dystonia are scared", and I wasn't -- just angry and frustrated. Mine was caused by an adverse reaction to a drug (neuroleptics, antidepressants and anti-nausea medications all are known to cause dystonia). I do Botox injections every 3 months (100 units per visit) and I also take Baclofen 30 mg/day and I just started Artane at 1.5 mg/day on my way up to 6 mg/day. All of these things help me. Before the Baclofen, I could not speak or eat, and could barely get my mouth open to where the gap between my upper and lower teeth was about 1/4". I lost 13 pounds in two weeks and I was not overweight to begin with. After I started the Baclofen, I could at least eat, but speaking still took a great deal of effort. When I did my first Botox injections, they helped quite a bit. I still have a tough time talking, and cold weather and fatigue make it worse. Unfortunately, I live in a cold climate, so there's no getting around the cold factor. Anyways, just wanted to let you know that you're not alone. Hopefully you can find a good movement disorder specialist and find a treatment plan that works for you. Good luck!