This Is MS Multiple Sclerosis Knowledge & Support Community

Joan, I can't believe I forgot to list Jeff as one of the celebrities with MS. Check out the blog http://www.enjoyingtheride.com to see that I've corrected my error!

I just updated my blog (link at bottom) with my six month post treatment report. It's not good news.

Last week I had a follow-up ultrasound, using the Zamboni protocol. If you are interested, please read the update at my blog: http://www.enjoyingtheride.com/2010/08/ccsvi-diagnosis-and-treatment-log-entry.html I had both jugulars and azygos ballooned on March 17- Dr. Sclafani. Long story short- I no...

Aside from CCSVI, are there medical tests that a doctor performs on a person with MS....MRI's, spinal taps, etc. that determine progression? I apologize for my dumb questions. My darling man and I had a conversation the other night and he mentioned something about one of his doctors telling him, wh...

I was at the symposium on Monday. The doctor being discussed here is Dr. Siskin, from Albany, who is an absolutely top rate interventional radiologist, and has now done many of these procedures. He's just giving it to us straight, people. One third saw significant positive results. One third saw mod...

I am PPMS, in a power wheelchair full time, 8 - 8.5 EDSS, and had CCSVI treatment from Dr. Sclafani in March. I've not seen any improvements, but I may or may not have stopped getting worse (and that is my goal). It will take me a few more months before I can say for sure. Here is my CCSVI story: ht...

Blain,

Great reports. I really like Dr. Siskin's attitude. Reminds me of Dr. Sclafani, my CCSVI doctor. Perhaps it's not a coincidence that Siskin was a resident under Sclafani.

I can't help but chime in here, as a person with MS and CCSVI, who is in a wheelchair, and who was a CCSVI patient of Dr. Sclafani in March. Sure, opening our veins won't get us up out of our wheelchairs, but it may stop further damage from occuring, so that we remain able to use wheelchairs in the ...

I am drafting a "12 week update" for the blog, which I expect to post sometime in the next few days. Did it work? It's complicated. I'm sorting that out as I write my next blog post. I've posted my 12 week update here: http://www.enjoyingtheride.com/2010/06/ccsvi-diagnosis-and-treatment-log-entry.h...

I just posted my 12-week update after CCSVI treatment with Dr. Sclafani: http://www.enjoyingtheride.com/2010/06/ ... entry.html

[quote="Trish317]
This is all so fascinating to me because my darling man has walking difficulties (completely numb feet) and cognitive issues. I'm not sure where his lesions are located. [/quote]

The items l list are only tendencies. Almost nobody fits the PPMS mold exactly.

I also am confused about how they put us in that (PPMS) box. Aside from the fact that I don't get relapse/remissions, what other differences are involved??? There are several differences between RRMS and PPMS: 1. PPMS have no relapses, and no remissions 2. Disease activity in PPMS is not inflamator...

I am PPMS, and have been liberated by Dr. Sclafani. For an accounting of my experience, please read these blog posts: http://www.enjoyingtheride.com/search/label/CCSVI%20Diagnosis%20and%20Treatment%20Log I am drafting a "12 week update" for the blog, which I expect to post sometime in the next few d...

I seem to be in the minority. I had significant stenosis in both IJV's and Azygos which was ballooned, and I've seen no improvement in my heat intolerance since the March 17 procedure. I am PPMS.

WhyRWeHere, I just discovered that Zamboni's work is less effective for PPMS than the other types. I had such high hopes.... We want to go through the procedure but I wonder what to expect. Thanks for this blog! Does anybody know whether it's less effective for us because not all of the affected ve...