Poll: CCSVI - The Next Steps

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

Poll: CCSVI - The Next Steps

Postby euphoniaa » Tue Apr 20, 2010 5:37 pm

(I'll preface this by saying that I AM officially "on a list" for future CCSVI treatment.)

There's been such angry stuff posted today that I thought I'd try to inject some humor as well. I've often been criticized for daring to have MS and a sense of humor at the same time...but I truly can't help it. :D

Anyway, I put together this poll way back in November '09 (honest) while watching the early impatient CCSVI hysteria, the posts of trash talk against the entire medical community, and the instant experts who suddenly appeared after reading only an article or two. After I finished it, I (thankfully) decided to sleep on it before posting (as I do whenever I laugh so hard while writing that I fear I've crossed the line). I was glad I had held it back once a few serious adverse experiences were posted - truly shocking and sobering. I wish them well.

I thought I had created such an exaggerated joke "Poll" the general satire would be obvious, no one would take it personally, and it might lighten things up a bit. Instead, most of these ideas have actually appeared in threads either before or since, and the anger, suspicion and hysteria haven't abated all that much despite the fact that CCSVI awareness and treatment are proceeding at a comparatively record speed.

Amazingly enough, I suspect a few of the more unlikely ideas noted below may have actually ‘worked,’ at least a little bit. Just like the CRABs, we’ll never know for sure, though, will we? :) Although I'm an avid CCSVI Forum reader, I generally only tiptoe furtively through its threads to make teeny posts; this place can get kinda scary at times. :)

Anyway, some may perceive the poll below as satire at its most irritating, but for most I hope it eases the intensity a bit and elicits a few hearty chuckles as well. We're all in this together, and the fresh new look at MS that will come by examining it through the perspective of CCSVI could bring us REAL laughter if we can calm our impatience and our frustration with the pace of true science. I feel empathy for all -- especially for those whose MS has been even more disabling and frightening than mine. But I've found that laughter helps me through it all.

A few more thoughts: I DO want to express my thanks to those who've been fearlessly paving the way – to those who had the nerve to be first in line, to doctors who are challenging the status quo, and also to those who are keeping us informed with calm, rational, and realistic information as opposed to speculation. I've been deeply touched by the personal stories, and I feel cautiously hopeful that all our lives will change for the better once the dust settles. Although I'm not the slightest bit impressed with any of the current MS med treatments, I do NOT believe there's a widespread conspiracy to keep us sick.

The whole world is watching...let's show them how classy and cool we are. Are too. Are too. Are too. :D

Good health, good wishes, and much good humor to all.

Susan

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Poll: CCSVI – The Next Steps
Please take a minute to choose the attitude and approach you plan to use in light of the new CCSVI discovery. Check all that apply.


( ) We can now join forces to put the greedy pigs of Big Pharma immediately out of business!!! They'll never again be able to make money off us, because we plan to become suddenly healthy and never need another med from them!!!

( ) We should arm ourselves with our assistive devices and storm the ramparts of MS organization offices around the world, demanding that they abandon all current work in order to address our CCSVI concerns or we'll take our money-making disease elsewhere!!!

( ) We should start a campaign to force our lousy, self-serving, over-paid doctors to drop all other patients and concentrate on learning how to treat us for CCSVI first!!!

( ) Someone heat up the tar, I'll get the feathers!! Beware neuros who are taking longer than 3 days to embrace the CCSVI Paradigm!!!

( ) We should solicit celebrities with no scientific expertise whatsoever to "sell" the CCSVI idea to established medical researchers who are, of course, too dumb to see its merits as a potential treatment despite the fact that it's already been discussed and dissected on all the social networking sites of the internet!!

( ) I smell a conspiracy!!! I'm not sure which faction(s) of which world government(s), but I'm sure some of them are plotting to hide the best MS treatments from us to keep us disabled!!!!!

( ) I stayed at a Holiday Inn last night, so I'll be glad to perform the CCSVI Procedure on you! (an American commercial joke that may be lost in translation)

( ) I have CCSVI, but all I got was this lousy t-shirt. Nice mug, though. (another American tourist joke that will no doubt be lost in translation)

( ) What's a Paradigm – and can I get a drug for it?

( ) Next Steps? Hell, I just hope my next step doesn't land me on my ass.

( ) I plan to keep myself well informed about the latest CCSVI developments and forward them to the chosen friends and medical professionals in my life who would be most receptive and most likely to continue to spread the idea or assist in my search for answers. I remain optimistic, and confident that the scientific community as a whole will uncover the true nature of CCSVI and how to address it now that they've become aware of its possibilities.


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Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby bestadmom » Tue Apr 20, 2010 6:30 pm

I try to deal with MS with humor too, so I'll check off taking the next step and not trying to fall on my ass. Actually,I'd be happy falling. I can't move my legs enough to take a step.

Check out the link in my siggy. YOU will appreciate it.
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Postby euphoniaa » Wed Apr 21, 2010 5:51 am

bestadmom wrote:I try to deal with MS with humor too, so I'll check off taking the next step and not trying to fall on my ass. Actually,I'd be happy falling. I can't move my legs enough to take a step.

Check out the link in my siggy. YOU will appreciate it.


Hi bestadmom,

Oh good! Someone laughed! And your link is great. My life has been so absurd and so silly for so long that laughter has become a major part of it. MS isn't even at the top of my list of concerns, though, either medical or otherwise. I've posted many times that if I woke up one morning and MS had magically disappeared from the world I fear I might not even notice for weeks. :D So much for CCSVI treatment...but I still look forward to finding out.

The poll choice that resonates with me is the same as yours, although MS is so weird that my legs can do most anything except walk. I accidentally started an intense exercise program 20 years ago when my legs first freaked out on me and before I was told I had MS, so that exercise wouldn't fix it anyway. Now my legs are so strong I can pick up my cane and bound up several flights of stairs even though I can't walk a straight line on a flat surface for crap, even WITH a cane. MS is so weird.

Another true story: I work at a university and often get caught in the throngs of students changing classes and texting at the same time. As long as I'm on the stairs I can keep pace with them, but as soon as I hit a landing I have to pause immediately to plant my cane and balance myself. One after another of the distracted students who follow run smack into me from behind - bam, bam, bam. I smile sweetly and apologize that I know I should get a walker, but I don't think I'm strong enough to carry it up and down the stairs. :D

Keep laughing.
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Postby Lyon » Wed Apr 21, 2010 6:37 am

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Last edited by Lyon on Mon Nov 21, 2011 5:17 pm, edited 1 time in total.
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Postby euphoniaa » Wed Apr 21, 2010 6:00 pm

Lyon wrote:Actually with that experience you could be a great help to new people who believed those studies which gave the impression that exercise won't help people with MS.

To be sure, although you don't have complete control of your legs, you don't have any doubt that the exercise has increased/stabilized your muscle tone?
Bob


Well hello, Bob! And yes, I'm absolutely positive about the benefits of exercise in increasing my strength, mobility, coordination, balance, etc. I've come up with dozens of exercises that I rotate in and out of my routine, as well as using the machines sometimes at the local Life Center. If anyone's interested, here's a good thread from back in October where several of us compared exercise notes and I went into great detail about my own routines and successes with them.

http://www.thisisms.com/ftopict-8417.html

One of the most amazing improvements I've had was from using a hand exercise ball to regain most of the control over a nasty, progressive finger tremor. :) When I was first diagnosed we were constantly told not to "overdo" it with exercise. That always confused the hell out of me since I had always thought diet and exercise were why I seemed so strong and mobile compared to others my age at the time, despite other miscellaneous health issues. I feel very fortunate that it worked so well for me, but it certainly did, and some of the current research is finally confirming it.

Best to all.
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Postby bestadmom » Wed Apr 21, 2010 6:07 pm

They say use it or lose it and I believe that. I got lazy with my PT a few years ago and lost function very rapidly during the 3 months I stopped. tupid me. Maybe I wouldn't have landed up in wheelchair had I kept it up.
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