3kidsmommy
Mouseketeer
- Joined
- May 9, 2001
- Messages
- 204
Hi...haven't posted in a while, but....
DH is 37 and in October was dx with MS. Symptoms at diagnosis were that of a stroke. I was convinced he had one. The lesions on his brain showed up on CT scan and the MRI showed just how many--too many too count. Spinal fluid showed markers of MS as well. Up until that point, NO symptoms at all. The only non-stroke symptom was the loss of peripheral vision. He was in the hospital for a week on the solumedrol (steroid) and then sent home. Tried Copaxone first...no change at all, worsening of symptoms slightly (he has EVERY major symptom) and tons of new lesions on 2nd MRI. New doc wanted him to try Rebif...which we did. It was stopped today because 1. it wasn't doing a thing (no progression slowing, plateau, anything--we still haven't been able to detect an actual relapse/remission) and 2. he was deathly ill from it. Every Monday, Wednesday and Friday evening he would get the shot (I give them to him). Every Tuesday, Thursday and Saturday he had to spend the entire day in bed recuperating from being up vomiting and shaking and feeling horrid all night the night before. Get the picture of no life at all?
Anyway...after speaking with our MS doc from the MS clinic he is now going to, it was decided to stop the Rebif. Teh only other line of defense we have is trying Novantrone, the chemo drug used to help slow progression of MS. That, and all the medications he is on (9 total!) to treat the symptoms. This has all happened so fast and his disability is so shockingly quick and severe that we are a bit lost. He only can walk short distances with his cane, such as in teh house, etc. and uses a power chair for everything else. His tremors, even with meds, are so bad that I shave him and have to help bathe him. We don't know much about Novantrone, and wanted to hopefully hear about someone who has been on it and what happened, etc. Totally non-Dis related, but you all were so helpful when planning our Dis trip back in April that I thought maybe someone out there might be able to give me knowledge again! Thanks, guys!
~ Tracy, mom to 3 kids and wife to my soul-mate
***I love my son with autism!***
***I love my husband with MS!***
DH is 37 and in October was dx with MS. Symptoms at diagnosis were that of a stroke. I was convinced he had one. The lesions on his brain showed up on CT scan and the MRI showed just how many--too many too count. Spinal fluid showed markers of MS as well. Up until that point, NO symptoms at all. The only non-stroke symptom was the loss of peripheral vision. He was in the hospital for a week on the solumedrol (steroid) and then sent home. Tried Copaxone first...no change at all, worsening of symptoms slightly (he has EVERY major symptom) and tons of new lesions on 2nd MRI. New doc wanted him to try Rebif...which we did. It was stopped today because 1. it wasn't doing a thing (no progression slowing, plateau, anything--we still haven't been able to detect an actual relapse/remission) and 2. he was deathly ill from it. Every Monday, Wednesday and Friday evening he would get the shot (I give them to him). Every Tuesday, Thursday and Saturday he had to spend the entire day in bed recuperating from being up vomiting and shaking and feeling horrid all night the night before. Get the picture of no life at all?
Anyway...after speaking with our MS doc from the MS clinic he is now going to, it was decided to stop the Rebif. Teh only other line of defense we have is trying Novantrone, the chemo drug used to help slow progression of MS. That, and all the medications he is on (9 total!) to treat the symptoms. This has all happened so fast and his disability is so shockingly quick and severe that we are a bit lost. He only can walk short distances with his cane, such as in teh house, etc. and uses a power chair for everything else. His tremors, even with meds, are so bad that I shave him and have to help bathe him. We don't know much about Novantrone, and wanted to hopefully hear about someone who has been on it and what happened, etc. Totally non-Dis related, but you all were so helpful when planning our Dis trip back in April that I thought maybe someone out there might be able to give me knowledge again! Thanks, guys!
~ Tracy, mom to 3 kids and wife to my soul-mate
***I love my son with autism!***
***I love my husband with MS!***
