Chronic Cerebrospinal Venous Insufficiency (CCSVI)-

radeck · Post by **radeck** » Thu Sep 03, 2009 9:02 pm

Thanks all for the answers. This is a great forum, i.e. well informed and helpful people.

cheerleader · Post by **cheerleader** » Fri Sep 04, 2009 6:06 am

CureOrBust wrote:
mrhodes40 wrote:... gotten from Dr SImka suggest something unique is being noticed by him that others have not reported on yet either, namely the "may-thurner-like-stenosis" pattern he sees on doppler in his office.
Marie, I don't specifically remember the "may-thurner-like-stenosis", could you please give a poor student behind in his readings a pointer?

That was from an e-mail to me from Dr. S, which I shared here, Cure. I asked him about why Jeff's veins looked so compressed on MRV. Dr. Simka said that he had never seen anything like the MS veins he was viewing, and that the closest situation he could liken it to were the veins in May Thurner Syndrome which is caused in the legs when the left iliac vein is compressed by the right iliac artery, and crunched down. Hopefully, there will be more discussion of this in Bologna...I'm outta here tomorrow!
cheer

LR1234 · Post by **LR1234** » Fri Sep 04, 2009 7:03 am

Have fun cheer!! Are you going alone or with Jeff?

L

mrhodes40 · Post by **mrhodes40** » Fri Sep 04, 2009 2:16 pm

Cure,
Cheer's right it is somewhere in this big thread and is just a comment in an email nothing more. May -Thurners results in a hardened area on the vein where the iliac artery crosses the vein and whacks it continuously--I got the idea it was as if "calloused" and thus hard so it did not give and flex like it should, but that may not be technically accurate....

catfreak · Post by **catfreak** » Fri Sep 04, 2009 7:21 pm

It took 5 years for me to be diagnosed with MS. It is really hard to be labeled "Probable MS" for 5 years. Is it or is it not???

The guys will like this one.... Dr Dake said if I was a "BEER" I would be "MS Lite" as far as leisions. I have 8 leisions and they are small compared to some he has seen. But, that does not change the relapses or the progression that has happen to my body. I am still very mobile but I have everything else you could have with MS.

We asked had he seen others with even lighter than me in those of us he has stented. He said yes he had. But we have all been diagnosed with MS.

I filled out the form he gave me for EDSS and I was a 4 mainly due the the severe fatigue.

This is going to open a huge can of worms for the drug companied. They will not like it at all.

Cat

catfreak · Post by **catfreak** » Fri Sep 04, 2009 7:24 pm

Lew,

Maybe we should all go on "Oprah" together and get the word out????

Cat

CureOrBust · Post by **CureOrBust** » Fri Sep 04, 2009 9:30 pm

cheerleader wrote:That was from an e-mail to me from Dr. S, which I shared here, Cure.

You mean i missed one of the 855+ posts on this thread?

I am soooo embarrased

CNClear · Post by **CNClear** » Wed Sep 09, 2009 5:03 pm

How about sending the information to Michelle Obama? Her father has MS, I bet she would be very interested to learn of these recent developments...I would do it, but I am not as well versed in this as many of you...I am still trying to get my PCP to refer me to a radiologist for pics so I can send them to Dr. Dake...after my first email to my Dr. she responded that I needed to try the industrial strength support hose! What I didn't know was that my message was truncated to only 1000 characters...I'm surprised she even got that much of the CCSVI concept!

Also, Laura Bush is interested in health care and why not Montel? Why let Oprah have all the kudos?

Lisa aka, CNClear
dx RRMS 1983
age 50
Near Atlanta, Georgia

lyndacarol · Post by **lyndacarol** » Wed Sep 09, 2009 5:24 pm

It has been written here:

Michelle Obama? Her father has MS,

I believe her father HAD MS. I think he is deceased.

ErikaSlovakia · Post by **ErikaSlovakia** » Wed Sep 09, 2009 10:47 pm

Yes, her father HAD MS.
I also would do it.
Erika

Sarahbellum · Post by **Sarahbellum** » Sat Oct 03, 2009 7:13 pm

Loobie wrote:Let's all hope that Joan connects with someone in the media bigger than a local paper; I know she was working on that. That's the deal. I don't think, and I of course could be wrong, that this information will be suppressed, but I do think that it won't be just plastered on every telephone pole either. When reading the research section in the latest NMSS or maybe MSF magazine there were all kinds of drugs, but this would be where that would go, so maybe GiCi has made a connection that will at least put it out there are "this is also current research". It will get there eventually if enough people benefit from it. Hell, as soon as I (fingers crossed please) start feeling any better, try and keep me off Oprah .

I am new to this forum. I agree with the above that information about this may be being suppressed. Curious that NMSS has no information about CCSVI.

Could it be that this outpatient surgical solution might reduce the number of patients taking expensive disease modifying drugs? The cost of shunts that could have a lifetime result has got to be less than even one year of DMD's.... In addition to a MS and vascular disease story, there are other angles, too: public health, economic, multi-disciplinary multi-national approach to research, healthcare reform, internet forums, etc. etc.

I sent emails to Rachel Madow show and to NYT about the Zamboni research. How about the people in this forum having an organized approach to informing investigative reporters about this breakthrough in MS research" I'm not clear who is organizing the PR effort but I hope he/she reads this. Is it the wonderful Joan who attended the conference and wrote the excellent summary???

I am assuming Zamboni, et al WANT publicity at this point. Does anyone know if they do want publicity now? If the research is about to be published in journals then maybe that's when the news will surface in the general media and to our neurologists.

cheerleader · Post by **cheerleader** » Sat Oct 03, 2009 8:29 pm

Sarahbellum wrote: I am assuming Zamboni, et al WANT publicity at this point. Does anyone know if they do want publicity now? If the research is about to be published in journals then maybe that's when the news will surface in the general media and to our neurologists.

Hi Sarah-
Welcome. I'm Joan/Cheer. I know there will be lots of publicity in the future, and nothing is being suppressed. It's just all new. A few news divisions are waiting for the release of Bologna/Jacobs paper in Vascular Surgery Journal and are coordinating activities around that. There's a long lag time between research and implementation. I think the best thing to do with all your terrific energy is to talk to your local doctors and universities. That's how I ended up bringing Dr. Zamboni's research to Stanford. Let's get the researchers looking at the CCSVI paradigm. The press can't help us if the research papers aren't there. It doesn't work that way, as I've learned. Read up, print out the research and keep us posted.
all the best,
cheer

Sharon · Post by **Sharon** » Sun Oct 04, 2009 6:31 am

Sarabellum -
DITTO to what Cheer said.
This is going to take time. Five months ago. I thought that everyone would be jumping at the chance to read the research --- I was wrong. Our efforts will start to payoff - it is patience and persistence. Ashton Embry is now interested - look at his article in the Pathways magazine.

Sharon

ewizabeth · Post by **ewizabeth** » Tue Oct 06, 2009 8:35 am

This is interesting. I'm going to ask my MS neuro about it when I see him at the end of October. This would explain why fish oil helps MS patients to feel better, and a healthy diet. When I switched to the Mediterranean diet I had quite a bit of improvement.

I've been on Tysabri for 2 1/2 years now and I have very bad fatigue. Maybe I'm approaching this the wrong way? Anyway, this is interesting and I'm going to do some more reading. You guys are way ahead of things at this site.

msladyinca · Post by **msladyinca** » Mon Oct 12, 2009 12:22 pm

Hi Ewizabeth,

Fatigue is one of the side effects of Tysabri. See page 9 of the Tysabri label:

<shortened url>

you might want to ask your neurologist about Provigil, because it really works well to fight fatigue. I am on Provigil, plus I just completed my 39th Tysabri infusion and have been on this medication for more than three years now.

Good luck to you, Lauren