My boyfriend was diagnosed w/ ALS when he was 25 - that was 13 years ago. He now is experiencing symptoms of what might be "Cervical Stenosis" which has a direct link to ALS. The only symptom he had initially, was the loss of motor function and muslce degeneration in his right hand. He is now experiencing numbness/weakness in his right arm with pain and numbness in his neck. He will be having another MRI and an EMG, (which I hear is REALLY fun). He had both of these 13 years ago...is it truly possible that he was in remission for this long...is a Laminectomy or Laminostomy the answer? He's scared...I'm scared...any advice/comments would be greatly appreciated!

Jenn,

While it is true that the slowest cases of ALS are typically those that begin at a very young age (like your boyfriend), what you describe would be extremely unusual for ALS. Even Stephen Hawking, who got ALS in his early 20s and has had it for about 40 years, was very disabled after 13 years. And I'm saying this as someone who has been concerned about possibly having ALS after having mostly fluctuating, mild symptoms for 25 years now. Have your boyfriend's symptoms slowly progressed over this time or were things basically stable until this recent pain and weakness in his neck and arms?

Cervical stenosis does not have a direct link to ALS; on the contrary, it is a condition that can mimic ALS to some extent and needs to be ruled out in reaching an ALS diagnosis. Pain and numbness in the neck along with numbness and weakness in an arm sounds more like a pinched nerve in the neck (which cervical stenosis can cause or contribute to) than ALS, which generally does not have prominent sensory symptoms like numbness and pain. If his only initial symptom was loss of function in one hand when he was 25, it is possible that the original ALS diagnosis was incorrect, that he was having problems from a pinched nerve in the neck that caused the hand weakness then, and it has flared up again for some reason. Was his EMG back then considered abnormal? Seems puzzling that a competent neurologist would come to an ALS diagnosis in a 25 year old (ALS is very rare in someone that age) based solely on loss of function in one hand, since that could be caused by a number of other things, especially a pinched nerve in the neck. Given the subsequent 13 year history, pinched nerve seems even more likely as the cause of his problems then, as well as now. You might ask him what kind of doctor gave him that original ALS diagnosis and if he got it in writing. ALS is diagnosed by ruling out all other diseases and conditions that can cause the observed symptoms and findings, and at the top of the list of things to rule out are problems with the spine - pinching nerves and thus affecting their functioning.

A laminectomy would be a surgery to correct something like cervical stenosis to stop the spine from pinching on the nerve. If the doctor thought the problem was caused by ALS, he/she wouldn't be recommending a Laminectomy or any surgery, since this would do nothing to help with ALS.

If I were him, I wouldn't accept having that surgery or a diagnosis of ALS without at least a second opinion from a neurologist. I wouldn't accept the ALS diagnosis as things stand (from what you've described) without confirmation from a neurologist with expertise in ALS, and probably even then, not without a second confirming opinion.

Hope this helps some and helps ease your mind a bit.<u></u><u></u>

<font size="3">Jenn,

Sorry, but had one more thought or question. Wondering if your boyfriend was followed, for at least some time, by the neurologist who originally gave him the diagnosis (assuming it was a neurologist, because no other speciality is really qualified to make a diagnosis of ALS as far as I know). I ask because if the neuro saw your boyfriend periodically over some extended period of time, like at least one or more of those 13 years, and if there was no real progression during that time beyond the initial weakness in that one hand, it seems to me that a competent, responsible neurologist - from what I've read and experienced - would reconsider whether the original diagnosis was correct. If your boyfriend saw ANY doctors years after that diagnosis and told them he was diagnosed with ALS, I'd bet, based on my own experience, that all of them would have told him they doubted that diagnosis, assuming there was no further progression beyond what you described. Surely this would have at least put some doubt in your boyfriend's mind about the correctness of that diagnosis?!