My son (15 years old) has recently (a.k.a today) been diagnosed with Hirayama's Disease. After reading your posts I'm concerned that he's been misdiagnosed.

His Wikipedia reference-linkMRI shows a protruding disc in his neck which compresses his spinal cord when his neck is flexed. Symptoms prior to diagnosis included hand shakiness (can't use a pencil), uncontrolled twitching of all limbs, complete lack of reflexes in all limbs and a prior diagnosis of Developmental Coordination Disorder (DCD). No visible evidence of hand wasting, as of yet, though his shakiness has progressively worsened over the past 3 years.

Some of your posts suggest that only the hands are involved. Meanwhile, my son has all limbs affected. Also, from pictures I've seen in articles it's not usually a protruding disc, but rather a lesion, that causes the compression in Hirayama's disease. I'm not sure if that makes a difference or whether any compression in the neck area can lead to Hirayama's disease.

Current treatment suggestion is surgery and neck brace. The neurologist has referred us to a neurosurgeon and has scheduled EMG and muscle wasting tests. In the meantime my son has been advised to give up all sports (including climbing - his passion). We've been advised to mention his diagnosis if, for any reason, he has a neck jarring accident or needs to be put under by an anesthesiologist. Apparently he's a walking time bomb and the wrong motion could sever his spinal cord.

My son's a cool kid who absolutely refuses to wear a neck brace to school. I really feel for him. But, right now I'm finding it hard to reassure him.

I'm also wondering whether the car accident he was involved in, a few years ago, may have caused this. My son was in a pick-up truck with his father. They had a boat and trailer in tow and were waiting at a stop light. A van slammed into them at high speed pushing the boat into the cab of the truck and bending the trailer in half. The boat, trailer and truck were all written off in the accident. Meanwhile, father and son appeared to be uninjured. Perhaps we were wrong and it's taken us this long to discover that our son suffered a serious injury.

Does this sound like Hirayama's disease? If so, is this the usual course of treatment? It must be especially difficult to cope with a neck brace.