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Hi Macjacket
What an incredibly frustrating journey you’ve had. But like Wayne said, it’s great they identified and fixed the heart issue.
I have cervical dystonia with the main symptom being tremor. I have Botox which has a reasonably good effect on it. I was also active beforehand. One of the best things I did was have my neurologist refer me to a physiotherapist who specialised in neurological conditions. She helped me develop a series of exercises and stretches that help with pain and range of movement. As a result I’m able to go to the gym regularly.
I also have dry eyes, twitches and little spasms in other parts of my body so dystonia isn’t just affecting my neck.
Before you go to see the neurologist type up a list of all your symptoms, even the weird ones! Try to video any body parts that move or spasm. And also do up a list of medication you’ve been on and how you think it’s affected you. My dystonia is aggravated by some meds.
Good luck with your neurologist appointment and please let us know how you go.
Merry Xmas
Denise
