Dystonia

[livingwith]

I am a 53 year old women living with dystonia. This is a new diagnoses but not a new disease to my body. For 20 years my illness has been called “chronic fatigue”, “epstein Barr”, “fibromyalgia”, even “celiac disease”, but it all has finally come down to hemidystonia.
It was the specialist at Mayo Clinic in Rochester, MN who listened with a clear ear to my complaints and found the diagnosis.
I was started on cenement 25/100 1 at bedtime and cou...Read the full article

[Kelly44]

Hi I am a 31 year old woman who has recently been diagnosed with dystonia also. Fortunately, I have been able to receive a quick diagnosis. I just typed in my symptoms into the computer and dystonia popped up. I then proceeded to go to a neurologist to confirm what I already thought I had. At this point I have idiopathic dystonia, which means they don't know what caused it. Mine can go over my entire body, but I tend to stay cramped and kinked in my shoulders and neck. I am writing you because I have found great relief in chiropractic care. I have had adjustments, electric stimulation to my neck and shoulders, neck stretching, and low level laser treatments to my brain. I started going in 9/08 because I was so cramped and moving every night for a minimum of 1 hour. By 12/08, my major movements had decreased to probably once/week. I still have movements, but not as often. I am currently struggling with my neck being kinked to the left and my left shoulder having a constant burning knot. I highly recommend you checking in to chiropractic care. I just found a neurologist I like in Springfield, IL and will begin medication tomorrow to see if that helps further. I will also have an MRI done on my neck soon. My brain MRI came back fine and all my blood work has ruled out other diseases that can be related to dystonia so I am praising the Lord for that. Hope you find relief soon foryour pain.

[Laine]

I tried all you did, plus other things...be sure and try Neurontin / gabapentin. With this, as with other things, what helps one might make another worse. I have taken it for 12 years nearly, and though it used to cost me a percentage of my yearly income, it costs nearly nothing now (costco). Keep all of us posted.