My heart goes out to you. We have been dealing with this for a year now. He was also tested for MOG…negative on that. He was 73 when diagnosed.
It’s been a long struggle. He was 204 lbs when he started and now is 157. All muscle is gone. Because they don’t know much about his disease we don’t know if this is normal. They just tell us everyone is different. Our question is always just where are we headed . We are hoping when he is off the steroids he doesn’t have another relapse.