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Amyotrophic Lateral Sclerosis (ALS) Message Board

Amyotrophic Lateral Sclerosis (ALS) Board Index

The only thing that even vaguely evokes thoughts of ALS in your story is the gait disturbance. In ALS, however, the disturbance is due to muscle weakness that your neurologist would have easily found.

Sensory symptoms like the burning and pain point strongly away from ALS as while they are almost certainly nerve related, ALS doesn't affect the sensory nerves/neurons, only the motor neurons. These are what conduct movement signals to your muscles.

Although ALS is an unpredictable disease and there are people like Stephen Hawking who have lived decades with it, about 50% of those affected die within 2-3 years, and nearly all of those with leg onset are in a wheelchair in 2 years. Having sensory only symptoms with no verified clinical weakness after 2.5 years just doesn't fit.

All the above said, you clearly do have something going on. Your symptoms sound very similar to those of cervical myelopathy which would match the pathology you mentioned prior to the surgery. The question is why are those symptoms persistent, and in fact worse, after the surgery to remove the pressure on your spine. This is something you should definitely discuss with your surgeon. Some possibilities are: nerve damage due to the surgery, instability caused by failing hardware or lack of proper fusion, or "normal" swelling/trauma from surgery that will go away over time. Also, surgery for myelopathy isn't necessarily as successful as surgery for nerve impingement. A study I read suggested as many as 30% of people that undergo surgery for cervical myelopathy are in worse shape following the surgery than they were before it. This is why some surgeons will say that CSM surgery is really only to stop the progressive damage not for symptoms relief. I hope you are not one of those but you should definitely follow up with your surgeon to discuss.

Good luck and let us know how things go.

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