was just told I've had MS for 4 to 5 years in June this yr

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

was just told I've had MS for 4 to 5 years in June this yr

Postby james32 » Fri Aug 27, 2010 7:37 pm

after that, it explains alot to me. its not from work it was something else bigger. No I can't make it go away. 8O
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Re: was just told I've had MS for 4 to 5 years in June this

Postby cheerleader » Fri Aug 27, 2010 8:10 pm

james32 wrote:after that, it explains alot to me. its not from work it was something else bigger. No I can't make it go away. 8O

Welcome, James. Sorry you got an MS diagnosis, I know- it's a shock. But you're right, at least now you know it wasn't something you did (at work or in your lifestyle) that gave you this disease. You're not to blame.

Here on the CCSVI forum, we follow the research of a doctor who believes it is caused by a congenital venous (in your veins) malformation that you were born with. This defect creates a lifetime of slowed drainage from your brain. If you want to learn more about this condition, check out www.ccsvi.org
If you want to learn more general stuff about MS, look into the general threads. Great advice on here and good people. Read up and hang in there. You are not alone---
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Postby blossom » Fri Aug 27, 2010 9:02 pm

hi, i hope you are dealing ok. it is tough news to get and how do you accept it? well, i couldn't tell you the answer because it's 20 yrs. and i haven't. try and be checked extensively for other things like lymes disease etc. this site and many others have a lot of info. seems what may work for 1 may not work for all but at least there is a chance it will. there is no good time to be diagnosed with ms but for all it's worth i feel you and the other newly diagnosed have been diagnosed at a time when i feel for the first time in ms history there is history being made. mainstream medicine and the rule of thumb and the rule on greed etc. had managed to suppress the concept and great work of a few great doctors for years who knew and tried to get the vascular involvement with ms known. they were suppressed and we have suffered for it and many got rich because of it. nothing is a silver bullet "i only wish" but because of dr.'s like dr. zambonni, dr. simka, dr. dake, dr. sclafani, dr. haacke,dr. mehta, dr. sisken and his group, dr. haskal, dr. hubbard and more coming on board that have dared to defy the mainstream that has always pretty much run the show things are going on that should really give you hope. and not to make light of the fact that it is proof that we people with ms might have weak muscles but we have a very strong backbone and the persistance that people with ms have shown since ccsvi was first heard of truly is remarkable. so, hopefully ccsvi will be one of the answers for you and soon they will solve this puzzle. remember "life is like a box of chocolates". so, don't say it can't be fixed-think they can't quite fix it today.
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Postby Cece » Fri Aug 27, 2010 11:08 pm

Welcome, James. Sorry this has happened to you. Five years is a long time to be having symptoms and not knowing what's causing them. I've been there too.

As Cheer said, this is the CCSVI subforum, and we'll gladly share all we know about CCSVI, which is a condition that has been linked to MS where there are blockages in the veins that drain the brain and the spine (the jugular veins and the azygous veins, respectively). It is a possible break-through, it's not at all how MS has traditionally been seen.
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Postby HappyPoet » Sat Aug 28, 2010 8:03 am

Hi James,

I'm so sorry you have MS, but I must say that you've just heard from the three most compassionate and caring people here at TIMS, so given that you have this awful disease called MS, you are very lucky to have landed here at TIMS because . . .

Cheer started the CCSVI ball rolling around the planet when she happened to read a post on the general forum about a research paper written by Dr. Zamboni on something called CCSVI. The concept made sense to her, and with her determination, it seemed as if the world was tilting several degrees on its axis as word of CCSVI began spreading around the Internet, gathering momentum with each passing month.

Cheer has worked tirelessly for almost two years researching the science and bringing it to TIMS when she could have easily just stayed within her private life enjoying her husband's newly liberated improvements -- her husband, Jeff, was the first person to have the liberation procedure in the US
(Dr. Dake, Stanford, '09).

In addition to being our beloved leader here at TIMS-CCSVI, she also started and manages the Facebook page, "CCSVI in Multiple Sclerosis," which has over 17,000 friends, and she is also the leader of "CCSVI Alliance," which is the premiere CCSVI advocacy association on the Internet. Here are the links:

http://www.facebook.com/pages/CCSVI-in- ... 0796282297


Blossom is a pretty flower who makes people feel special, and she shows them where hope is when they thought hope couldn't be found. Listen to her closely because her posts are laced with wit, wisdom, and whimsy, and she welcomed you with these terrific new gems:

for the first time in ms history there is history being made

the rule of thumb and the rule on greed

they were suppressed and we have suffered

we have suffered for it and many got rich because of it

dared to defy

might have weak muscles but we have a very strong backbone

don't say it can't be fixed-think they can't quite fix it today

Cece shares her CCSVI smarts with everyone, and her intelligent and often humorous posts can often be found on Dr. Sclafani's thread where she helps whenever she can. She's an encyclopedia of CCSVI knowledge. Really!

She'll help you with any questions you might have. Why, in all the questions she's answered here at TIMS, she's only gotten one wrong... but since it was about wild bears instead of twisted veins, we let her stay. Just kidding! Seriously, she will answer any of your questions.

James, while I'm not in the same league as these three lovely ladies, I still welcome you to TIMS and wish you the best of luck. Anytime you have a question or concern, ask away, and someone will come along with help and support.

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Postby MS_HOPE » Sat Aug 28, 2010 3:17 pm

James, welcome to the world of MS, and TIMS! You've come to an excellent place (as Happy Poet has so eloquently pointed out), one which it took me ten years to get to - guess I'm really slow!! (Dx'd in 2000 after symptoms since 1994, or before) The MS diagnosis was actually a relief for me, because it reassured me that I wasn't losing my mind or being a hypochondriac. There was a reason for all those seemingly unrelated symptoms! And it enabled me to be proactive in managing my illness, which has made all the difference.

And now, thanks in large part to cheerleader, I believe we know about the probable underlying cause of MS - a hugely significant discovery called CCSVI. Definitely check out the website ccsvi.org that Cheer recommended.

And to Cheer, Cece, Blossom and so many others here on TIMS, many, many thanks for all your caring and sharing. What a difference you're making!
CCSVI:  Making Sense of MS
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Postby garyak » Sat Aug 28, 2010 3:32 pm

welcome to TIMS James. Try to get on a list for ccsvi testing soon. The first replies to your post are written by well respected and very wise members here on TIMS. They will have invaluable advice for you.
Read some of the stickies and "Dr. Sclafani answers some questions" thread. This sub-forum will educate you deeply in ccsvi.
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