SwiftTaySwift20
Well-known member
Well today was my second visit with the neuromuscular specialist that I saw at my 6 month mark. He wanted to see me at 1 year to check my strength and reflexes. He said he would not have to do another EMG this time and he didn't. He did a thorough check of my strength and reflexes and everything was fine. Without a doubt in his mind he said "you do not have ALS."
A lot of people on here are really concerned about muscle atrophy. Once again at the neuromuscualr clinic they did not ask me to remove any clothing to check for atrophy. The resident did visualize my tongue but that was it. The only thing the specialist cared about were strength and reflexes.
He wants to recheck my VGKC antibody level. He said it may have lowered, stayed the same or gone higher. It was borderline high the first time. He said if it has gone higher he would need to consider treatment from a benefit vs. side effects/cost perspective. He said one of the treatment options cost between $20,000 - $25,000 in the U.S. and the benefit of the treatment may only last from 2 -3 months. He mentioned other medications including steroids but it sounded like he wanted to avoid any of these treatments unless it was absolutely necessary. I may have to be screened with a chest CT to rule out the development of a thymoma over the next 4 -5 years if the VGKC level remains elevated or goes higher.
Swift_TaySwift20
A lot of people on here are really concerned about muscle atrophy. Once again at the neuromuscualr clinic they did not ask me to remove any clothing to check for atrophy. The resident did visualize my tongue but that was it. The only thing the specialist cared about were strength and reflexes.
He wants to recheck my VGKC antibody level. He said it may have lowered, stayed the same or gone higher. It was borderline high the first time. He said if it has gone higher he would need to consider treatment from a benefit vs. side effects/cost perspective. He said one of the treatment options cost between $20,000 - $25,000 in the U.S. and the benefit of the treatment may only last from 2 -3 months. He mentioned other medications including steroids but it sounded like he wanted to avoid any of these treatments unless it was absolutely necessary. I may have to be screened with a chest CT to rule out the development of a thymoma over the next 4 -5 years if the VGKC level remains elevated or goes higher.
Swift_TaySwift20