Hi!So, I checke…

Hi!

So, I checked in with my IR and everything was just fine- same as last year at this time, according to the nurse’s observations (my IR himself had to leave to go save someone’s life… ha, a likely story :)). She said though that Dr. Williams is no longer pursuing a study. It sounds like a combination of having too much on his plate, and more importantly, not having support from his hospital to pursue a study- I think he got a lot of flack for treating me and a couple other people. The FDA also says now that no MS patient should get this treatment because it’s not clear that it helps MS, and because there have been a few cases of complications from the procedure. One CCSVI supporter (a doc) pointed out though, that ALL procedures involve some level of risk. I don’t know if the risk is any higher with this procedure than any other IR procedure that is like it. And, the FDA is still perfectly fine with patients who do not have MS, getting the exact same procedure for the exact same condition (blocked jugular veins)- it’s safe and has been done in this country for over 40 years now. But with MS patients they have now issued a recommendation that no MS patient get this unless it’s as part of a study.

On a personal note- I got my MRI back and though the results were really uninformative, I did get the sense overall that I have no active lesions or new lesions- yay! 

Annette Funicello was found to have one completed blocked and one 70% blocked jugular vein. I believe she recently got the procedure but that they feel it’s hard to know the benefits in her case because she’s so advanced in her disease progression.

Anyway, this might be my last post for a bit unless anyone writes me with questions! I hope this blog is useful ongoingly to people who are considering the procedure. Best wishes to all and thanks for being with me through this journey of healing! I’ve learned so much from this whole thing, but one of the things I’ve realized lately is that you know what your body needs, in some way. I learned to listen to my instinct a lot more and it is serving me well. I don’t mean I know what prescription drug I need and that sort of thing, but I just knew I had to get this procedure and I did and it helped. Anyway, I am yawning and probably not making sense anymore so I am off to bed. Thanks again!

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Hi,It’s been f…

Hi,

It’s been forever since I’ve posted- I’m now at one year and nine months and still feeling great. I think the positive thinking helps- I had to work on that so I wouldn’t constantly fear that the MS would come back. In the last several months, I have had two new symptoms (also was under a TON of stress):

– Legs buckle after too much work on feet

– Sometimes whole right side of my body feels extremely “weird” and uncomfy. This comes and goes. 

Other than that- I now take 1/3 of the muscle relaxant I used to take. That is awesome. 

Just got my first mri since the procedure and am curious to know the results. I’ll keep ya posted.

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