[Donna Caruso]

In July 2018, my husband had x-rays on his left shoulder because it was so painful. After seeing the x-rays, our family doctor referred him to a neurologist. In September 2017 I noticed huge twitches in his left shoulder. When I asked him what that was, he said “what”. He hadn’t even felt it. After that, the twitching started in his left arm and is still continuing, only it is worse. Our first appointment with the neurologist was in January 2019. After being tested and receiving an EMG on his left arm, the doctor told us that he thinks he might have ALS and that he would like to see us again in 6 months. We went back to see him in July 2019 and they did the EMG testing on his right arm and both legs. By now, the weakness and muscle mass has progressed. We were now told that he probably has ALS. At this time, he has no use of his left arm or hand. Getting dressed is a real challenge for him. I now tuck his shirts in for him, help him put shirts on and sometimes his socks. This is very frustrating.

During this time, he was seeing a physical therapist at the hospital because he had rotator cuff surgery on his right arm in May 2018. When they were talking, my husband mentioned that the neurologist told him that he probably has ALS. The therapist told him that there is no way you have ALS. After that, my husband came home and was so thrilled because she said that there was no way! It was like being on a roller coaster. I told my husband that we will just wait until the neurologist tells us what is going on because he is the one trained to do that. It has been very upsetting to everyone.

We have our next appointment on January 28th, 2019 to get the final diagnosis. My husband says he knows that he has ALS. He says he can feel the twitching in his back and in his legs now. Some days, his voice is really deep and he is swallowing a lot. Last night, he said his right leg was so cold so I’m not sure what the next sign will be. I will update after our appointment on the 28th.

By the way, he also had carpel tunnel surgery on both wrists in January and February 2017.

Donna