Tuesday, February 9, 2010

Great Resource for MS News and Info

Read All About ItImage by Mr Noded via Flickr

Just wanted to pass along a very valuable resource for anybody seeking the latest MS news and information.

I'm sure there are many out there like me, who hungrily scour the web for whatever pieces of information might help solve the MS puzzle. At least I hope there are many out there like me, as I'd hate to think I'm all alone in my obsession. I don't expect that there are too many others pathologically obsessed with vintage fedoras, or antique New York City postcards (only two examples from my overstuffed portfolio of fetishes, manias, and obsessions), but I imagine that most people affected by MS actively seek out info and opinion regarding the disease.

The mother lode of MS info is "Stu's Views and MS Related News", a weekly e-mail newsletter stuffed with all of the worthwhile MS information gleaned from the previous seven days (click here to register). Stu also maintains a website (click here), and a blog (click here) which is updated several times a day with the latest breaking news.

The MS news feed in the left column of Wheelchair Kamikaze comes from "Stu's Views and MS Related News", and I encourage everybody to take advantage of this very valuable service provided by Stuart to the MS community.

CCSVI NEWS ALERT: Something tells me that some very important information regarding the Buffalo CCSVI study will be released tomorrow morning at 9:30 AM. That same something tells me that everybody interested should check out the Buffalo Neuroimaging Analysis Center's website (click here) Wednesday morning, for what should be some enlightening news regarding the results of the study.

Something else tells me that the Abominable Snowman likes to write his name in the snow when he pees, but that something might just be the frozen the enchilada I ate for lunch.

UPDATE: the Buffalo CCSVI numbers have been released (click here for link). Results indicate that 55% of MS patients studied showed sign of CCSVI vascular issues, while the same type of vascular anomalies were seen in 25.9% of healthy test subjects.

I'll have more to say on this in a post later today, but suffice it to say for now that these results are significant and in-line with what would be expected given what we know about the nature of Multiple Sclerosis.

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  1. Maybe I am dense...can you explain the last sentence to me? Does writing your name in the snow mean something that I dont understand?

  2. It's funny, I don't look for data about MS at all. I think I feel very resigned to the possibility that MS will not be cured in my lifetime. Sorry to be such a downer. :(

    On the other hand there have been incredible advances in just the past ten years. So maybe I'm being overly pessimistic.

    As an aside, I also collect old postcards of NYC and of Asbury Park. Oooh, that just gave me an idea for a blog post. Thanks Marc!

  3. you are not alone in your fedora obsession. I just wish i could find better ones


  4. Here is a link to the information on CCSVI that came out today: http://www.buffalo.edu/news/10937

  5. Obsessions are a good thing. They give those of us without gainful employment something to get out of bed in the morning for. Or in Marc's case in the afternoon.

  6. THANK YOU for the PLUG, Marc --- Working together enables that many more, to get the information we both graciously supply...

    Keep 'em coming and stay away from yellow snow !!

  7. What if the elusive Abominable Snowman is a she? I suppose her name would be Dot.

  8. Right on. "Stu's News is a great resource and I read it religiously....whatever that means. Another favorite source of mine is MS Central (http://www.healthcentral.com/multiple-sclerosis). There you can find great articles or series of articles on very relevant topics about living with MS ranging from clinical trials to wheelchairs.....and your blog seems pretty good too. I am subscribing to that too.

  9. I believe CCSVI is at the root of the problem. I have PPMS AND HoCM (hypertrophic cardiomyopathy). So do many neurological researchers I've written to.

  10. Hi,

    We met in Dr. sclafanis office in New York! I am Marie Louise from Denmark and was the next in line for the procedure after yours. Do you remember me? I was really scared to have the procedure and you told me that it was'nt so bad. I just want to tell you that your words made a big difference to me:-) Check out my homepage for my expierience with the procedure.


    Looks like we are kinda in the same "juglar" boat....

    Stay cool kamikaze;-)