This Is MS Multiple Sclerosis Knowledge & Support Community

1st sign was stumbling/tripping more often than others; probably for 2 yrs before being dx in 2000 at age 46 with PPMS - never had RRMS.

I second that emotion! I am thankful first and foremost for Dr Zamboni. From there the list covers the big names performing CCSVI treatment and those researching, the pioneers who have undergone treatment, the TIMS and facebook communities, and our friends & family who are supportive of this jou...

I'm not wanting to 'interrupt' these very interesting cases. When time allows, I would love your opinion on a procedure done by Dr Stone at Mayo in Phoenix. The following is 'cut & paste': "The surgery is simple enough: cut my neck open and take a look at the size and condition of my veins,...

Dr Sclafani, you did my 2nd venogram and we found that I have a completely occluded LIJV. I just read a paper by Dr McGuckin on CVO (chronic vein occlusion) and the use of a Baylis guidewire to open these veins. The paper is at http://ccsvism.xoom.it/ISNVD/Other/Abstract-Mcguckin.pdf and I'm wonderi...

Cece wrote:*bump*

Yeah, I don't recall ever seeing this thread on Page 2 of CCSVI...

So VERY happy to hear this, Cece!

Dear Dr Sclafani - please avoid Irene; stay safe! Same sentiment to all those on the east coast...

Thanks, munchkin, erika & bestadmom! I think all of you described what I'm feeling. Today was temple/right ear area but only happened this a.m. and no weird sensations since. Who knows. munchkin, I used to get the electric feeling you described when I would drop my chin to my chest; haven't had ...

I'm hoping there's still 7 others watching this thread. I'm a bit off topic here but does anyone else who now has an occluded vein have strange sensations in their head/brain? I ask because today there were a number of times that for a few seconds, I would have a throb or weird pain. Hard to explain...

My major improvements were gone within 8-10 weeks. Had 2nd procedure six months after 1st procedure and was told at that time that I had a totally occluded LIJV...could not be treated.

It is odd. The perception of my availability,or my ability to treat remains confused. I can schedule but cannot manufacture patients. Dr. Scalfani, Could this be an issue of insurance coverage? Are patients still be covering by their insurance for this procedure or are these companies refusing (as ...

I have also wondered if others (pwMS) have a lower "normal" body temp. Mine was pretty consistent at 97.4 prior to angio; now it's 98.4 post-angio. And I sweat!

bluesky - you have touched so many of our lives with your words, inner beauty, positive attitude and determination. Thank you. Sincerely.

I make art quilts and would be willing to donate for silent auction (or whatever) This is a great avenue for those of us who want to promote ccsvi research but are unable to donate $$. And it's always fun to buy

Great idea, bestadmom & zinamarie. Maybe a gallery of works...silent auction...fund raiser...