I was diagnosed with dystonia but the GP never told me so I learned about it just a year ago and the 2018 report said I have ET and dystonia. I am far away from the Movement Disorder Clinic in Vancouver now.
Swallowing issues started 1st and then neck, (very painful for quite awhile), then face, jaw and head stiffens until I get a ringing in my ears. I have been on levodopa for over a year and it has been loosening up the stiffness for about 4 hours then it comes back but when I'm on it the ringing isn't noticeable. The thing is this intense stiffness now affects my swallowing, digestion and center of my chest with noisy breathing as well. I wake up with it and it's there 24/7. I had a swallow test that showed decreased tongue base movement and a scope that showed nothing while looking for obstruction but the surgeon said he suspected crico- pharyngeal dysfunction. It's an upper sphincter most often affected by Parkinson's disease.
My vocal cords seize up sometimes until it's painful and feels like a lump in my throat. A new symptom is my left leg (hip to lower leg) has becomes painfully stiff and the pain is new as it wasn't like a cramp or muscle spasm so I had to get up and walk on it. It happened several times in the daytime where the ankle was trying to turn inwards while I was walking. One day I was dragging my leg in the store. I had no idea all of this could be dystonia until I starting Googling symptoms.
I was just reading a another post that sounded like my own digestion, swallowing issues and this is the first post for me since joining....a few minutes ago. Worse is the change in brain function and slow speaking, (considering stiff face not to hard to imagine why), thinking as well as apathy.
Do any of you who have experience with this disorder think this might be something more than dystonia? ET (essential tremor) doesn't have these other symptoms and is now a head tremor and internal shivering shake with no hand involvement. I'm feeling stumped but the levodopa does help and I get some energy with it which is likewise diminished. I am not seeing a movement disorder specialist. My GP thinks ET has progressed to Parkinson's.
Thanks so much for allowing me to vent here. It's a relief to finally be communicating with someone about it.
