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- More about me (my health interests and reasons for joining WEGO Health)
- I should say that everything I say here must be tempered by the fact that I have not been diagnosed with any form of dystonia yet. As of this writing, I have only known of the existence of this condition since mid-august of 2008. Since I first chanced across a video on my cable company's 'on-demand' service, it's been a kind of dawn breaks moment for me. I began to do research, and came across one of the other Dystonis sites. Imagine my shock when I went to the 'What is Dystonia' area and the first things I see are drawings of the different manifestations of the the disease, and one of them depicts a woman with her chin firmly planted on her chest and the caption 'anterocollis'. Why shock? because that, except for gender, is the Image I've seen for more than twenty years when I mustered up the energy to contort my body enough to look into a mirror. Medically, that particular symptom got lost in a storm of other conditions that hit in a relatively short period including, but not limited to, Thyroid, Arthritis, Heart Disease resulting in a quintuple bypass in my late 40's, and the real kicker, Diabetes. If the progressive stiffening and pulling down in my neck was addressed at all it was "I'm going to treat that as part of your arthritis" or the scariest one, "I've never seen anything quite like that, have you had it checked out?" (that from the surgeon who was about to perform my heart surgery, and had been complaining within obvious earshot of me how difficult my neck position was going to make his job. Great bedside manner, huh?). Seeing that image was the first time since I realized I had a distinct problem that I actually thought there might be some hope. Now I'm looking for a way to afford what I'm sure is going to be an expensive and ongoing situation, but no matter what it takes, I know this much: If I can simply get a firm, confident diagnosis, even if I can't afford another thing beyond that, I will consider it real progress. If there is a way, I'll find it.This vicious affliction has tried to rob me of my dignity, my ability to make a living, and my relationship with my wife. It very nearly succeeded, but that last aspect was the last straw. My relationship with my wife means too much to me. I cannot give up, it's not an option. So even if this is something else entirely, the courage and compassion of the people I have read about on this site and others has been an inspiration to me, and I will continue to look to them for encouragement, and I will continue to offer moral support as often as I can.
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PS I have cervical dystonia also..