Hi from a long timer

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Hi from a long timer

Postby cathyb » Wed Jan 06, 2010 2:53 pm

Hi, everyone!

I have had MS for about 12 years now, and am SO ANGRY with the research progress I could spit! Now I am finding out that neurologists/researchers have known about the venous theory of MS for decades and have largely ignored it. What?!? Why ignore ANY of the research out there, let alone an entire THEORY! HELP I NEED TO VENT, mostly on behalf of my two small children who need their mother in good working condition, not as a slowly deteriorating human pincushion being used to line the wallets of big pharma!

Oh, BTW, I'm really a very nice person and need to channel my anger. I am pleased to meet everyone on this forum, who are NOT the people I want to scream at. ;)

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Postby jimmylegs » Wed Jan 06, 2010 5:55 pm

hi cathy, welcome to TIMS! scream away, we're all here to listen. the next few years will be very interesting ones for us!
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Postby Karazhan » Wed Jan 06, 2010 10:30 pm

Cathy, sometimes I think I'm the only one screaming inside my head about this while others remain calm and pro-active. I personally enjoy reading the vents, especially such an eloquent one. Are you okay?...well, of course you're not, you have a crappy disease. What I mean to say is, how has it been for you?
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Postby ndwannabe » Wed Jan 06, 2010 11:08 pm

Hello Cathy and welcome from another newbie!

I must worn you about this forum though, I have been reading for several hours each day non stop so far - BEWARE! :twisted:
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Hi, JimmyLegs & Karazhan!

Postby cathyb » Sat Jan 09, 2010 7:24 pm

JimmyLegs... you, I think, are one of my heroes. You are one of the family elders of this forum, are you not? What a great way to get all of the information out about CCVSI. I have been absoluely INTRIGUED. For a long, long, LONG list of reasons.

Karazhan, I am actually doing fine. I have had two children in 4 years, due to my age, not my MS (I know there are people out there that get pregnant to alleviate symptoms, which seems like it would be a LOT of work.). I'm 40 this summer, I was diagnosed in 1997. So wow, I guess I've had MS for 13 years. MS has shaped me on every level of my life, but physically I'm doing better than many.

So much of this disease has bothered me. I'm not talking only about the physical, which has ranged from losing my vision in one eye (I have it back), to numbness, to fatigue, vertigo, etc. etc. etc. I have been on Avnoex and was on Rebif (hated the latter, had HORRIBLE injection site reactions, long horrible story), and Tysabri right before it got recalled. I will one day write a story about my MS and how marginalized I have always felt. How I have grown up with it, wondering how on earth they can continue to promise a treatment, fail, promise a treatment, fail, promise a cure, FAIL, etc. etc. etc. Its amazing.

When I found out about CCSVI it was like someone put a huge piece in the middle of the puzzle. It fits EVERYTHING. What happens during pregnancy? Increased blood flow. What happens during breast feeding? Same thing. why do people say bee stings work? The body reacts by increasing blood flow. What about nutrition? Exercise? Cardiovascular health. I was in a daze for days I was so happy. Strangely, you know what? My family members aren't as thrilled about this as I am (even though they are typically the ones sending me articles about different things). I think they don't want to get their hopes up only to have them dashed again (like tysabri.) But ultimately, even if CCVSI falls apart, well, for the first time, people with MS are standing up and telling the world that we want more than just a promise. We want to know what is happening. How liberating!

I sent a letter to CBS news because I think they should know that this movement is going on. We are telling neurologists, the NMSS, researchers, and everyone involved in our treatment that we have a right to know whats going on with our lives. It feels GOOD!!

Glad to be here!
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Postby Cece » Sat Jan 09, 2010 9:47 pm

Amen!!!
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Re: Hi from a long timer

Postby NHE » Sun Jan 10, 2010 4:24 am

cathyb wrote:I sent a letter to CBS news because I think they should know that this movement is going on. We are telling neurologists, the NMSS, researchers, and everyone involved in our treatment that we have a right to know whats going on with our lives. It feels GOOD!!


Cheerleader was interviewed by CBS. Her husband was one of the first people treated for CCSVI in the US by Dr. Dake at Stanford. However, I don't know when the program is expected to air.

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Postby jimmylegs » Mon Jan 11, 2010 3:27 pm

hi cathyb, yes i've been here since 06, but i don't think i deserve any hero status! i have next to nothing to do with the arrival and spread of ccsvi info on here - i am just a participant in a few of the discussions and not one of the ones who jumped on testing and treatment. i will admit the facebook group was my idea lol - but again, just words. cheer's the one who took action and made the FB thing reality.
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Postby poppet » Mon Jan 11, 2010 8:03 pm

Hello,

Dx just over a year ago. B4 that dx with menieres. Have also suffered severe migraines for years. I'm very interested in the developments of CCSVI and also trying to help myself with diet. Thanks for all the great info here!

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