Hi CarolSue,
My husband has a slow progressing variant of ALS. He first noticed weakness in his left hand 10 years ago. Then he noticed his watch was too big for the wrist due to muscle atrophy and moved it to the other wrist. He gradually noticed some weakness in the left upper arm over the next few years but it was very slow. He was never a person to go to doctors and waited until Oct. 2011 to go to a general neurologist. He did an EMG and said he could not exclude ALS. We saw The neuromuscular specialist who runs the ALS clinic in March 2012 who did all the blood tests and EMG and told us, "You definitely do not have ALS." He started IgG infusions and thought they were helping him. I really didn't see much improvement and he was starting to see some weakness in the right hand. On a return visit to this ALS specialist, my husband asked again, "Could this be ALS?" The doctor said, "you would be dead already if this was ALS."
There continued to be slow progression to the right upper arm and visible atrophy so we decided to go to the Mayo Clinic in Rochester in Dec. 2013. My husband did not want his neurologist to know about this. After a thorough exam the Mayo neurologist said he was pretty confident it was ALS and this was confirmed by the EMG.
My husband had a follow up visit with the ALS specialist in our hometown 4 months later who now told us it was ALS. He started riluzole.
He developed a foot drop in the summer of 2014 and was told to use a walker, which he refused to do. He also felt that he did not need any orthotic for the foot. He had multiple falls and fractured his left arm last winter. Last June he fell again and ended up in the hospital for 10 weeks with bilateral subdural hematomas and 3 episodes of aspiration pneumonia. The progression of the ALS was very rapid during this time. He now was unable to eat or drink by mouth. He had a trach and a PEG tube. His speech was now slow and hard to understand at times. My husband is the poster boy for the first rule for ALS patients-- DO NOT FALL.
I really don't know where we are right now as far as progression. Things seem to have plateaued. I often wonder where we would be now if my husband had been diagnosed more quickly and started on riluzole earlier. Possibly it would not have mattered anyway and we at least had a few more happy years not knowing it was ALS.
I hope your progression is very slow.
Sharon