Here is a detailed description that I posted on a Dystonia forum a day or two ago (asking for confirmation that this might be dystonia). Here it is:
I have made an appointment to see my GP. However I’d like to know if anyone here thinks Dystonia is a possibility given my symptoms.
My uncle has Dystonia, his head wobbles all the time like he’s always saying no, much like Parkinsons disease. He said the only reason his condition is that bad (my head doesn’t wobble) is because the doctors never identified it as Dystonia, and could have prevented it from getting that bad if it didn’t go undiagnosed for so many years.
He said it originally was a mild neck twitch that was not permanent, only every now and then. He also said it caused a problem with his ability to balance. These symptoms are exactly what I have. Along with a loss of awareness in my hips, shoulders, jaw, and eyes. Walking is a little awkward, I do tend to lose balance and wobble very easily especially if I move my eyes to the far left or right while walking. Moving my eyes tends to unbalance me when walking.
It’s harder to hold my head up now when I’m fully relaxed like watching TV, my head tends to “fall” to the side, as through my neck muscles have slacked off.
There’s also one more symptom, you know that feeling you get in your neck when you need to crack it? Well I have that feeling permanently and my neck won’t crack no matter how far I twist it. I’m surprised my head is still after on the effort I’ve put into trying to crack that “knot” away.
This was caused (I’m quite sure) from a period of excessive ecstasy and amphetamine use (which has now stopped, has been stopped for a couple of years now at least).
Does this sound like Dystonia? I have been to the doctors before (not knowing about the condition Dystonia) where I described my symptoms and he just dismissed me. He said “well, drugs are bad, they do bad things to you, now go away” (I’m paraphrasing there).
Now I’m going to see a different doctor, and if I mention the word Dystonia he may know exactly what to check for, I just hope it is Dystonia because if it’s not I don’t know if it will ever be diagnosed.
Thanks