I have visited that site. It seems there are some who go fast and some that live much longer albeit probably with respirators and or feeding tubes.
I visited an ALS support and met the first people I had ever encountered with ALS. One was a man in a wheelchair who had no visible bulbar problems but had completely lost all mussels in his left arm and had to wear it in a sling or it would dislocate. He could walk for 8 years. 2others had Bulbar, could walk and use their hands but not talk. They had feeding tubes put in. One other man had a Bipap in a wheelchair with no apparent use of hands or legs but talked fine probably no feeding tube either.
A friend told me his uncle died after 7 years but was still drove to 5
Besides possibly being anxiety there probably isn’t much to treat what ever it is at this point and it will be very hard to diagnose until it gets worse. Ill probably wait till spring then ask to get a referral for a neurologist
Hi BLphill. I am a new member. I saw one of your posts regarding a long onset period for ALS. Although not diagnosed my symtpoms seem to be classic I am male mean age for onset, first noticed weekness in foot then feet then hand almoast two years ago. Im still fully functional but getting weaker but VERY Gradually...I am interested in anyone elses experience in this regard...also hou can i start a thread for this topic
Yes, Our doctor did give a def diagnosis to Social Sec and Medicare. I do think he fudged a little, because Jim's UMD indicators are not strong, but he saw some Hyperrefexitivity, so He used that as a UMN symptom.