This Is MS Multiple Sclerosis Knowledge & Support Community

My understanding was that many people with MS were found to consistently have 25% to 90% of their jugular or azgous veins blocked. Is that an overstatement? How to approach a typical vascular doctor looking for a CCSVI style test? I'm trying to figure out what to look for and how to find it [esp. b...

After reading the instructions, I'm finally getting it, and the results look good, even for progressives. What about you? Ted have you noted any benefits beyond less fatigue? Do your hands get cold less often? Are you more, less or equally temp sensitive? I will try to persuade my doctors by pointi...

Ted and Pat, thanks, that's exactly the info I need. What is wrt fatigue? I don't think my insurance will pay for this, so I need to evaluate. Other than cost, another factor is whether the procedure is difficult to recover from. I've been in a wheelchair for 10 years. But more than anything I woul...

Cece, "Enjoying the Ride" is very well-written, full of heart and truth. I enjoy writing too, but it wears me out. How do you manage that? Great Flannery O'Connor quote too. You have to know reality to deal with it.
Take care, John

Thank you both. I will follow your guidance.

I think it will be helpful to keep track of how different categories of MS are responding to CCSVI treatment. I have primary progressive MS, which seems to resist most treatments. I know this is a lot to ask, but can everybody who has experienced success with CCSVI indicate which type of MS you have...

I have not kept up w/this drama, and as you can tell, I don't post here that often. But I would urge people who are talking about leaving TIMS to reconsider. This is a big community, and sometimes personalities will clash. But I have found many people who would stop and answer my questions. There a...

I want to thank Lisa, Marc, and everybody at TIMS that take the time and especially their limited energy, and share what they have learned, for our collective benefit. I hope in the not so distant future to be participating in this study. I'm not real great for travel, but will make it. Take care, J...

Thank you, Cheer. Now I understand the facts. I remember reading Holly's posts before I ever posted here. I'm sorry this happened to a well-regarded member of the TIMS forum.

jbro

I'm trying to find out more about this? The guy who wrote this seems pretty credible, and he does not seem to think the death was caused by the surgery itself, but I'd like to see all the facts.
http://www.wellsphere.com/multiple-scle ... ase/786771

That's great news jenf! I have submitted prior med records and will be talking with a vascular doctor soon. Regardless of how this works out for me, I want to thank cheerleader, bestadmom, catfreak and anybody else who is providing info/guidance abut this new procedure, and how to approach it. I wou...

Thank you all for your insights. I'll start w/Dr. Dake and then my GP. For some reason I am feeling very timid, even though that is not my nature at all. I'll post here whatever happens during the next few days.

Question: Would Medicare cover something like this?

Take care, jbro