how to promote CCSVI and my story

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

how to promote CCSVI and my story

Postby markus77 » Sun Jan 24, 2010 5:12 am

hey tims people,

i was thinking maybe a good way of getting the word out there on CCSVI could be through a actor/actress or family/relative who has MS? its quite obvious the media does not seem to want to get involved. so maybe they will listen to someone who is already in the lime light.

i have been writing comments on this sight for a few months now but never mentioned my story. better late than never i guess. i was dx in 1989 spms while i was playing college hockey. guess you could say i was a jock and lost it all. (physically speaking) i was 20 at the time so kinda hard to swallow such devastating news when you are full of piss and vinegar. its almost 21 years later and still tough for me to accept my position i am in right now. my comments i have written on this site have been on the negative side to say the least. after 21 years of dealing with the neuros and false hope you can imagine my state of mind. i took avonex for a few years back in 2001 - 03 and it was, to put it mildly, a night mare. that was the only time in my life i took a drug. there was a feeling inside me that kept telling me that these drugs are wrong. a drug that suppresses the immune system. those four words have never sat well with me and that is why i decided to go drug free and wait for an idea that actually had some truth and sense to it. (CCSVI) as the years passed i saw myself getting more and more negative with friend, coworkers, just people in general. for the past few months however i have noticed a transformation in my outlook on life and its, get this, positive. WOW. i can now see that light at the end of the tunnel everyone keeps talking about.

anyways just felt that i should open up a bit.
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Postby magoo » Sun Jan 24, 2010 11:48 am

Markus,
Thanks for sharing your story. I have never felt your posts were negative. 21 years is a long time to battle MS. I am so glad you have hope now. I hope you get to be tested and treated SOON!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby hoodyup » Sun Jan 24, 2010 1:14 pm

Markus, thank you for sharing your feelings. My wife is also SPMS and has been through the mill with regard to failed MS treatments. I think it is natural to feel increased negativity as your situation worsens. It was getting pretty bad here recently, but in the last few days she also has had an upswing in positivity. I never know what to attribute this to, but I am being extra nice :D Other factors could include the increase in raw vegetables she has been eating, the moon cycle or the fact that there is good football on tv. I just don't know. She isn't full of hope when it comes to CCSVI (as I tend to be). She said she would do it, although with some possible kicking and screaming. The idea of getting celebrities involved is a good one. That Hope for Haiti benefit netted over 57 million. People can be generous if they are motivated by their favorite celebrity. Stay positive. Good things are happening!

Andrew
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Postby markus77 » Sun Jan 24, 2010 1:34 pm

thanks magoo and hoodyup. those are kind words. maybe after CCSVI finally gets the recognition it deserves and people start getting treated on a regular bases we should have a TIMS reunion some where in North America opened to all? just a thought.....
STAY REAL MY FRIENDS

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hi

Postby kc » Sun Jan 24, 2010 1:52 pm

Markus,

\I feel your pain. I also had that little voice telling me not to do the CRAB drugs. I think if I listened to my neuro I would be dead or in a home now. Instead I take my LDN and my krill oil and have hope that I can be helped.

My mother always told me to listen to the little voice inside and I am glad I did!

kc
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Postby hoodyup » Sun Jan 24, 2010 1:58 pm

If lots of people start getting treated and feeling better they are going to want to have a big ol' party. People will be lining up to thank Cheerleader and give her a big hug! Hopefully, we will see you there.

Andrew
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Postby AnnaP » Tue Jan 26, 2010 6:25 pm

Hi Markus,

Your story sounds so familar. I am 43 and have MS since 1987. I forgot what's it's like to be "normal" I have a hard time accepting many changes and being happy to be alive. I'm tired, very tired. I want to be free and enjoy life, my kids and my husband. I, too was on Avonex, but also on Rebif and Copaxone. September 2009, MS progressed. I'm not on anything now, doctor took me off.
I have an appointment with Dr. Simka in March 2011. I have to hang in till then, it's going to be Hard!
I see the same light at the end of the same tunnel.

Anna
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Postby Johnson » Tue Jan 26, 2010 11:32 pm

AnnaP wrote:I am 43 and have MS since 1987. I forgot what's it's like to be "normal" ... I'm tired, very tired. I want to be free and enjoy life...
I see the same light at the end of the same tunnel.

Anna


Hi Anna,

Sorry to chop your post up a bit, I was trying to keep it relevant - I'm a man, no drugs...

I got a little snicker (from myself) when you wrote that you were 43, CCSVI/MS since '87 - I am 47, CCSVI/MS since '93 (actually, I was 48 just before X-Mas). You might need a glass of wine to understand that. Anyhow, that is more than half your life with CCSVI/MS! And you have kids... Wow. You deserve a medal. So do those that have been languishing for 30, 35 years, and those that have succumbed. (those that have had it for 6 months do too! There is no hierarchy to feeling like old porridge...)

I have been "lamenting" that 1/3 of my life has been this... None-the-less, I have often thought (and said) that it was a "gift" to me. I am not masochistic or anything, but although it has made my life very (insert what you like here), it has also enabled me to see things in a different way, to change direction, to pursue everything that I was waiting to do until "later" (except, get my pilot's license - which I will now do after liberation), and so much more. It would have been more gracious and acceptable if it was just a few years, but I was just recently starting to accept continued degeneration, until the end. Now I feel (almost) that I am 25 again, with my whole life before me. I feel that I have a lot to carry me forward now, and have thought that everyone should have MS for just a year, or two - but without the knowledge of possible relief. I think that everyone would be more light-hearted, and there would be more harmony in the world.

You are still young (hey, everything is relative!), and I hope, will experience all of the small joys in ways that most do not, for many years to come. I too, have forgotten what it is like to feel "normal", but unlike the lucky Italian fellow in the W5 piece, who forgets what it is like to have MS, I will never forget, and I hope that my every day will be filled with the exuberance of feeling like me again. This hell will be over soon, for all of us.

Pardon me the babble.
My name is not really Johnson. MSed up since 1993
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Postby AnnaP » Wed Jan 27, 2010 4:53 am

Hey Markus,

Forgot to mention, your idea getting celeberties to help promote CCSVI is a great one. Did you know that Mrs. Obama's father has MS? I wrote to her asking for help for MSer, Canadian or American. I hope and pray with her influence she can push CCSVI foward as fast as possible.

Anna
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Postby ms2009 » Wed Jan 27, 2010 8:21 am

Marcus, I think your story is one very encouraging and would help MS patients to continue looking at the positive side. For all of you who were on MS for long time, they are really fighting very well and maybe this is the time now to get a chance to get rid of this MS for the rest of their lives.

Even if CCSVI was not the final cure for everyone, it would open new doors. If the blood circulation is the main reason then there are a lot of opportunities that researchers should look for.
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Postby zinamaria » Wed Jan 27, 2010 10:59 am

Markus,

Thank you for sharing your heartfelt story. I could feel your suffering in your words. And Anna too, and everyone I have encountered on this site, by reading the insights, the stories, the challenges...well, this site has actually restored my faith in humanity.
And Johnson don't ever be sorry for your 'babble' for I feel deeply is it your need, as it is mine and others on this site, to connect ourselves and to stay connected through our stories, through our suffering. Stories are so important!
And like you, I too have seen this condition of MS as a gift in my life because it radically changed my life in the best possible ways. I have been with this condition (I refuse to call it a disease) for almost 12yrs and I too miss my 'normal' self; oh to feel that I could walk more than a half mile without weakness would be incredible, me who ran marathons! And yet, in that half-mile, I keep my chin up and try to smile, for I am alive. And for whatever reason I, or we, all of us, have this challenge in our life, well, I feel we must try and find the reason for it, meaning how can we use it to transform ourselves, spiritually and otherwise, AND/WHILE still keeping hope in our hearts for relief, for a cure, for all that we need to stay vital and vibrant.
Certainly I am keeping my eye on CCSVI, and at the same time on each and every moment of every day, so that I do not become bitter. I don't want to live that way. You see, I too was a rather negative person, in hindsight, but I can tell you no one in my past would have ever said that about me, and yet I know I was not loving humanity in the way I could. Much of that has changed just this last year as I had a serious relapse and suffered much; and you know what? The most unbelievable joy came to me and I hold onto that joy, for at the end of suffering, is joy. All the mystics knew this, and anyone what has suffered knows this.
Mainly I had to finally start telling people about MS, which I have held in secret for too long. And now I when I see fear register in people's faces, well, I feel I can give them strength because of what I have gone through.

As far as celebrities go, I have written many, many letters to the Montel Williams foundation (that says it is interested in a cure) and have had zero response. I know Montel takes pharms and perhaps his site is sponsored by major drug companies, who knows. But my letters urge him to get involved with the current research on CCSVI. He has had MS for over 10 yrs and he is such a visible person in the entertainment venue, so if he got interested in this, it could really help things along. I hope others are or have written to him. Also Teri Garr, and actress, has MS.

I want to thank you all on this site for being so helpful to me,
Peace,
Zinamaria (not my real name either!)
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Postby foreignlesion » Wed Jan 27, 2010 12:35 pm

I have no idea how to contact them, but the Canadian rock band Billy Talent is kicking off a Canadian tour in March. The drummer for Billy Talent has MS, and they do a lot of charity work. Perhaps they would be willing to do something on their tour?
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Postby markus77 » Wed Jan 27, 2010 12:38 pm

Thanks for the responses MSers. I finally found a place, after 21 years, that makes me feel like I am able to speak about ms without worrying about being judged or if people REALLY understand where i am coming from. As each day passes i find myself thinking more and more about the future and what it has to hold than the past which was the norm for me.

I went to my family doctors yesterday and presented him with the CCSVI research. He mentioned to me that he heard it in passing somewhere and it seemed like he was interested in the findings. I am not sure for he is a hard person to read but he has been my physician for 25 years so i am want to be positive. My doctor mentioned that he had some close connections with some vascular surgeons and would see what he could do.

Happy Happy Joy Joy
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