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A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Dr. Haacke and his study...I need more info please

I volunteered for Dr Haacke's study of narrowed jugular, and after seeing a few of my scans, he wants me to come for detailed imaging.

Honestly, someone e-mailed me out of the blue, because I had posted somewhere on the internet a year ago about pinched jugulars, and told me about this site. In a weeks time not only have I found out Dr.'s are researching this problem, but they want to study me. Kinda ...
Read more : Dr. Haacke and his study...I need more info please | Views : 2607 | Replies : 12

FTY 720 (Fingolimod) Considered for Stroke (Ischemia)

Hi all

I posted some info about the development of FTY 720 (Fingolimod) for stroke in the drug pipeline but thought I'd post it here as well given the apparent reluctance of some neuro's to consider the impact of CCSVI in people with MS. (The link in that post is open access but you need to register) More info:

The immunomodulatory sphingosine 1-phosphate analog FTY720 reduces lesion size and improves neurological outcome in a mouse ...
Read more : FTY 720 (Fingolimod) Considered for Stroke (Ischemia) | Views : 2034 | Replies : 4

Lesion location relating to stenosis location?


I'm new here, and have spent 2 days reading a lot of the material. I'm exhausted, but in a good way. I made it through the 50+ page original thread, and a lot of the other threads. Thanks to all of you who are contributing and being guinea pigs! This is exciting stuff.

I'm very interested in the procedure, and have emailed Dr. Dake's office.

My diagnosis of MS was based on c-spine and ...
Read more : Lesion location relating to stenosis location? | Views : 1390 | Replies : 2

Hope Happens in St. Louis


I have a meeting this coming Wednesday, Nov 4, with THomas A. Woolsey (Google his name) and other researchers at the Hope Center for Neurological Disorders here in St. Louis. Please look at their website :

I have already talked to Dr. Woolsey about CCSVI and he is cautiously favorable to the idea, but says he doesn't know much about MS. I hope I will get to ...
Read more : Hope Happens in St. Louis | Views : 2730 | Replies : 15

CCSVI on TIMS front page?


What about writing a CCSVI news article to the TIMS front page?

It seems that the latest news article was added in 2007. Compare with

I think it's better if a native speaker writes a text. The submit link can be found on the front page.

Thanks to Juan for suggesting this.

Read more : CCSVI on TIMS front page? | Views : 1783 | Replies : 5

Newbie getting ready to go!!!!!!!!!

Hi all I have gotten my turn to go see Dr. D on the 15th of Dec. I am so excited to go. I have no worries but my mother is a different story of coarse. She is freaking out about all of this. I know she is my mother and she has every right to be worried about something like this.
I have went against all of what everybody has wanted me to do ...
Read more : Newbie getting ready to go!!!!!!!!! | Views : 2104 | Replies : 5

Pseudo relapses

Radek mentioned having a 'pseudo relapse' and then qualified it as 'imaginary'. Actually, the way my neuro explained pseudo relapses to me was that something (maybe heat, excess exertion, stress, emotional upset, etc) would trigger something (maybe inflammation) that would cause actual symptoms, but that they didn't stick around as long as an exacerbation would. He said he thought I had one after having a bad emotional upset...I was upset that he thought I was ...
Read more : Pseudo relapses | Views : 1544 | Replies : 2


Moved to the random ccsvi notions thread.
Read more : Smoking | Views : 1259 | Replies : 1

EGCG, iron and the brain

Ursula, our German EGCG trial participant posted over in the Drug Pipeline

Wanted to make sure all CCSVI stento-teers and CCSVI curious knew about the iron chelating properties of EGCG (green tea extract)- thanks to Sharon for pointing this out again to Ursula-
Jeff's been on it for a year or so, as part of the endothelial health program. As we learn more about iron deposition in MS, ...
Read more : EGCG, iron and the brain | Views : 11776 | Replies : 43


From the Buffalo Neuroimaging Analysis Center (BNAC).

SWI-MRI image shows high iron levels in MS compared to control.

Read more : SWI-MRI | Views : 2116 | Replies : 5


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