- Nov 17, 2007
- Loved one DX
I am new to this site and this is the first post that I have done, but have been reading alot of information on this site over the last couple of months. My Brother (41) has some what had the ALS diagnosis. For about a year or so he was noticing weakness in his right hand. He ended up at a surgeons and they had found some issues with his C4-5 in his neck. He had some tingling and burning sensations in he arm and also weakness. He had a couple of different opinions and elected to have some surgery done on his neck. He had bone spurrs removed and a fusion done on his C4-5 in his neck. He had plates and screws along with fake discs. He was told that after the surgery he would be good as new. Well he got worse. His hand continued to weaken and he began having spasms (which he did not have prior to surgery). He had EMG, nerve conduction studies and he has seen several Neurologists. Two of the three Neurologist said that what he had was ALS. All his other blood work etc. ruled out other issues. He then went to see an ALS specialist that told him that he could not diagnose him with ALS. He said, that he can not say it is not ALS, but also can not say that it is. He told him that the surgery that he had was a very complex surgery and the symptoms could be related to the surgery. (not to mention he still has bones spurrs still on level 6 and 7) He is scheduled to go back in Febrary for a follow up visit. The thing that he is very concerned with is he is have the fascilations (twitches) all in his upper body. Mainly right arm, minor in his left and he said that some times his chest feels like it is vibrating. Today he has gone to the Cleveland clinic and they told him again they can't say that it is or isn't ALS. He is going back first week of Feb. for a 3 hr nerve conduction test and an MRI. My grandmother passed away 22 years ago from ALS and back then they said that the disease was not hereditary, now to find out that there is FALS. This is a very tough disease. I am just curious if there is any one that has had a situation similar to this. I appreciate your time.