Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
My telephone support group met today. One of our members hadn't been on the group for a while. He is a 38-year-old guy with PPMS,.he has two children and used to be a professional snowboarder. He also was a contractor who lived in California with his wife and two kids.
I guess he is from the Massachusetts area because when he became sick he moved back here. His speech is quite slurred and he uses a wheelchair pretty much all the time for what I can tell. He works out at the gym three days a week however and that's how we found out that he used to be an athlete.
The reason for my post is that he just had this CCSVI procedure done. He had good results short-term said he could stand unsupported and walked with the Walker for the first time in four years. However it sounds, like in some cases, his symptoms have returned. He's doing everything he can and I hope the best for him.
I told him I am also considering this procedure. I already knew it's fully covered between Medicare and Medicaid. Now surprisingly he wen out of to Chicago to have it done. Usually Medicaid only pays within the state but he said it was covered there. They may have made some exception. The procedure was $56,000 and he had to pay 45 out-of-pocket cost.
I looked up his Dr.and stumbled upon this website calling themselves the reformed MS Society. It's strictly a support and information site for people having this procedure done so I thought I would post it in case anybody was interested and wanted take a look.
The jury is still out on how beneficial this procedure is, but I have done a lot of research on it. A major study is has just been completed at SUNY Buffalo, New York. The results were promising especially for someone who does it early in the disease say in the first 10 years.
I had to chuckle at the name because the MS Society, here, Canada, and the UK, from what I can tell have been very opposed to this procedure.
Take care everyone
Melanie
I guess he is from the Massachusetts area because when he became sick he moved back here. His speech is quite slurred and he uses a wheelchair pretty much all the time for what I can tell. He works out at the gym three days a week however and that's how we found out that he used to be an athlete.
The reason for my post is that he just had this CCSVI procedure done. He had good results short-term said he could stand unsupported and walked with the Walker for the first time in four years. However it sounds, like in some cases, his symptoms have returned. He's doing everything he can and I hope the best for him.
I told him I am also considering this procedure. I already knew it's fully covered between Medicare and Medicaid. Now surprisingly he wen out of to Chicago to have it done. Usually Medicaid only pays within the state but he said it was covered there. They may have made some exception. The procedure was $56,000 and he had to pay 45 out-of-pocket cost.
I looked up his Dr.and stumbled upon this website calling themselves the reformed MS Society. It's strictly a support and information site for people having this procedure done so I thought I would post it in case anybody was interested and wanted take a look.
The jury is still out on how beneficial this procedure is, but I have done a lot of research on it. A major study is has just been completed at SUNY Buffalo, New York. The results were promising especially for someone who does it early in the disease say in the first 10 years.
I had to chuckle at the name because the MS Society, here, Canada, and the UK, from what I can tell have been very opposed to this procedure.
Take care everyone
Melanie
My apologies.
Depends where you go. I was tested at a vascular clinic in Barrie, Ont.
fall 2009, 4 of 5 veins blocked. Cannot get treatment here, know two others who have, with life changing results.
As I just read, the cost of the drugs ifor MS is so much, why not just treat this way? Perhaps this is the reason, pressure from "big pharma."
thanks for the link Dave, what is the currtent thinking about stents?
Lorna