This Is MS Multiple Sclerosis Knowledge & Support Community

Marc, thank you.
Cece, I completely agree with you that the symptoms of "MS" could very well be CCSVI symptoms. As Dr. Sclafani said, "this may be the case, but it will take years of study before we know."

Marc, I don't believe most doctors treating CCSVI are making 10k per patient. I have insurance and after the adjustments, my doctors were paid less than half of that. That is not a lot of profit after paying for facilities, equipment, and personnel. I don't know about the medical device companies, b...

I mean no disrespect, but it seems like you are insinuating that Dr. McGuckin is being deceitful and that is where the problem lies. There could be many reasons for his results. The fact is we just don't know how CCSVI is related to other diseases and how often normals may have this condition. So, I...

Thank you Dr. S. I will pursue a diagnosis.

The IR group here has a tech who was trained, but they have chosen to deny any type of CCSVI diagnosis or treatment as a group until they determine enough studies have been conducted. Really unfortunate.

I do have some neurological decline. I have been tired, dizzy and shaking. I have some cogfog and an intense feeling of pressure and pain at the base of my skull. I had a couple of months of intense chest pain after my last treatment, along with angio only for Nutcracker, so do you think these could...

Dr Sclafani, After two treatments, (10-09 and 4-11) and feeling pretty darn good, this January I began to sense something was off. I had an MRI yesterday and to my shock and surprise, there is a new 8.3mm lesion. If this happened to one of your patients, what would be your recommendation? Have you c...

I haven't been here much in the past year. A combination of enjoying life and the loss of a lot of old posters on this board. There is a lot of research being discussed and that is great, but I'm looking for a more personal experience. I am curious about how those treated are feeling. I'm hoping to ...

My Hashimoto's was caught by my new doctor recently. (the tests all showed a problem for years, but no one ever looked into it) I have been treated for CCSVI and I still have the thyroid problem. I wonder if this is permanent damage? Maybe after diminished blood flow for an extended period of time, ...

Great news Heather and Beth! :-D Although I will not be going to Stanford for my 2 year check-up, I wanted to post that I am doing amazingly well too! I have had a recent MRI which is absolutely stable. So, nothing new for two years!! I hope more of the Stanford group check in and let us know how th...

Point taken. But, because I am disheartened by neurologists, doesn't mean I am not leery of people trying to profit from ccsvi. There are opportunists everywhere. Unfortunately, in my experience, with neurologists I keep finding the money trail leading right back to pharma. I've been "sold"...

Frodo is right--the start of this discussion needs to be on what causes CCSVI. The recent findings of truncular venous malformations in autopsied jugular veins of pwMS by neurologists is causing a stir in the world of neurology--this interview came before the ECTRIMS presentation. Wellllllll, techn...

Although it's in keeping with what they've said we've recently heard from cheerleader about her husband's experience and magoo about her personal experience and it should also be noted that they've both been re-treated. It's not within my authority or intent to try to pose that as a damning stateme...

I just hit my 2 year mark and I'm holding steady with no MS progression and loving my improvements. I've had 2 treatments so far and anticipate I'll have more in my future. My half brother just found out he probably has MS and asked my advice on CCSVI. I was very cautious with him even though my out...

Cheer/Joan, When you started the CCSVI forum here and began informing the MS community about Zamboni, many lives changed, including mine. This was a very helpful, supportive and informative place. It was a pleasure to come here and talk with others who were interested in CCSVI and who were on their ...