Marc (Wheelchair Kamikaze) is "going for it"

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

Postby Lyon » Mon Mar 08, 2010 3:01 pm

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Last edited by Lyon on Mon Nov 21, 2011 6:12 pm, edited 1 time in total.
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Postby skydog » Mon Mar 08, 2010 3:47 pm

Marc, My thoughts are with you my friend. You have been rock solid in keeping a open mind. Not being swayed one way or the other has kept us all learning. Thank you for all you have done. Peace and health, Mark
Plant a BIG Garden Live in the Moment
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Postby marcstck » Mon Mar 08, 2010 6:08 pm

Thanks again for all of the words of encouragement and well wishes. I can't express how much they're appreciated...

in regards to "where I stand" on CCSVI, I try to take an open-minded and unemotional view of all MS research and treatments, because early on in my disease I learned that nothing is sure when it comes to MS. Becoming "emotionally attached" to a treatment only served to keep me from being able to assess things objectively. Of course, we all form our opinions, but I've had my hopes raised and dashed too many times to fall into that trap anymore.

I believe that CCSVI will prove to be a significant part of the picture for many patients, but that for others it will play no part in their disease process. I base this on the simple fact that I don't believe that MS is actually any one disease, but a collection of related conditions that share symptoms and some diagnostic criteria. Researchers doing postmortems on deceased patients have already identified at least four different types of MS lesions, each of which exhibits markedly different characteristics. Some show signs of immune activity, others indicators of infectious causes. It could be that one or two of these lesion types is caused by CCSVI, but I doubt that all could be attributed to this one cause.

Anyway, don't mean to start any more debate, just wanted to explain myself. Given the trajectory of my disease, I don't have time to wait to see whether research proves or disproves CCSVI. The anecdotal evidence, in addition to the preliminary buffalo results, convinced me that there's enough to this to warrant me giving it a go. I'm not expecting miracles, although certainly miracles would be accepted. A simple slowing down of progression would have me shouting for joy.

Again, thank you all for the wonderful show of support. At the end of the day, I'd like nothing more than to see this board shut down because it was no longer needed, and that we could all simply move on and live happy, healthy, productive lives. Can I get an amen?
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Postby ozarkcanoer » Mon Mar 08, 2010 6:21 pm

Amen !!!!!!!!!!!!!!

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Postby Johnson » Mon Mar 08, 2010 7:14 pm

I see your Amen, and raise a Hallelujah - for any and all who find relief.

I hope the NIH is wrong about you. Best of luck!
My name is not really Johnson. MSed up since 1993
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Postby Vhoenecke » Tue Mar 09, 2010 7:06 am

We all wish you the best and thanks for sharing Marc.
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going for it

Postby LSITC » Tue Mar 09, 2010 10:37 am

Good luck and safe travels.
I am sure that in time you and all the other "liberated" patients will be looked on as pioneers of this new treatment.

I echo the amen and the hallelujah and add "yippppeeeeee!"

Keep us posted
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Postby Cece » Tue Mar 09, 2010 2:32 pm

marcstck wrote:I believe that CCSVI will prove to be a significant part of the picture for many patients, but that for others it will play no part in their disease process. I base this on the simple fact that I don't believe that MS is actually any one disease, but a collection of related conditions that share symptoms and some diagnostic criteria.


I agree with you on this...and I hope that for you and me and everyone reading this, we fall into that first category. Best of luck tomorrow.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby jenf » Tue Mar 09, 2010 3:57 pm

Good luck tomorrow Marc... Our thoughts are with you!!
Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Avonex - 06/12-06/12

Late Stage Lyme - 12/10
Too many meds to list!!

Remember, today is the tomorrow you worried about yesterday..
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Postby simone » Tue Mar 09, 2010 7:08 pm

Amen !!!! wishing you best outcome and that this piece of the puzzle work for you! Your presence is inspiring .
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Postby avantitech » Wed Mar 10, 2010 5:21 am

Good Luck and All the best for tomorrow Marc!!
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Postby Sotiris » Wed Mar 10, 2010 5:39 am

Good luck Marc. May the liberation of your veins liberate you of your disabilities.
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Postby Needled » Wed Mar 10, 2010 9:47 am

Thinking of you, Marc. Hope you have an early procedure time and things have already started...
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going for it...

Postby aliyalex » Wed Mar 10, 2010 10:12 am

yes. lots of hearts are with you both...
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Postby SCGirl » Thu Mar 11, 2010 6:00 am

Has anyone heard from Marc? I pray his surgery went well...
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