This Is MS Multiple Sclerosis Community: Knowledge & Support

I was reading some of the testimonials from Direct-MS and it amazed me how similar they are to what people who have been liberated are writing. Extrapolate what you want from it but I just found it interesting. No I am not suggesting any sort of conspiracy I just thought it noteworthy how MS "recoveries" tended to sound the same.

http://www.direct-ms.org/testimonials.html

Especially these:

“Wanted to share some good news - six months on BBD and guess what! I feel great! So many improvements - but the one that really AMAZES me every time I look down at my left hand - is that after TWO YEARS of CONSTANT pins and needles and clumsiness.... IT IS GONE!!!! (Been gone for two weeks now...) The neuro told me quite clearly that this particular problem was PERMANENT caused by myelin/brain damage - HA! Stuff him and his amazing ‘knowledge’ - we know something he doesn’t...

. It is funny... There are still minor problems with my neck and therefore my balance, but what the matter is, I performed an almost perfect sight test with my right eye, where the whole mess started ten years ago. I even see the pixels on my notebook screen.”

“I am sitting here at work on my birthday getting all weepy-eyed at the changes this year has brought. Last year on this day, I went out to dinner with my in-laws at one of the nicest restaurants in town scarcely able to use a knife and fork, hardly able to talk, taking great care not to choke because I was having difficulty chewing, walking with a cane (barely), and too depressed to carry on a decent conversation. It was a few months after that that I found the BBD and all of you. Today I am well on my way to complete recovery. I can walk - even jog for several feet. I can eat. I have plenty of energy to do yardwork, care for (and wrestle with!) my darling little boy, I am working full-time and moving up the ladder at lightning speed. I have lost about 25 pounds, my skin is clear, and I must say that I am looking good! I am convinced that I will not go back to that dark place I was last year.”

Maybe the same people posted in more than one place?

Also I would say (from an English-major point of view), people know how to write about things because of models they have already read. (Once upon a time there weren't many models for, say, accounts of jousts, and so in Malory all the jousts sound the same.)

If, for example, I read (as I did, on TiMS) someone explaining that after venoplasty they felt like they had switched to HD from analog, it might strike me a useful way to describe an experience it would otherwise be hard to articulate. And so I have used it more than once myself.

-d

_________________
dx rrms august 2009 (dx CFS spring 1988) off avonex after 3 months
treated katowice 24-25 march 2010 - best thing that ever happened - check tracking thread

Nope. I am just making a connection between the comments of people who have been liberated and those who tried Embry's special MS diet.

Sorry, I didn't realize those were comments on the diet results. Interesting!

-d

_________________
dx rrms august 2009 (dx CFS spring 1988) off avonex after 3 months
treated katowice 24-25 march 2010 - best thing that ever happened - check tracking thread

Reads like an infomercial, like maybe for a new juicer, or a workout machine that'll help burn fat FAST!

I was reading the webchat from 2006 at the msrc with 'Dr' Trossel (just struck off for stem cell treatments that weren't and were illegal and towards the end, not even human stem cells)and all the positive testimonials read exactly like the venoplasty/diet accounts.

Maybe there's a common pattern to physical real or placebo (imagined/willed) improvements, less cognitive fog, warmer hands and feet, less fatigue in general?

It's perfectly likely that both are true.
So perhaps, what lasts, is a genuine improvement and the difference is, that at least CCSVI is measurable and tangible.

Personally, I have no love for Dr Embry. I follow his diet, but his anti-DMD attitude is distressing to me. I've done really well on Rebif for 10 years. It's stopped my relapses and thanks to 'socialised health care' it's free to me. However, I also take LDN and vitamins D3, B12 and strength training and IBT. Life without gluten or pulses is so much better - for me.

There is no one way to control/stop MS. What works for one person, won't for another. This is the cruel truth of life with this horrible, distressing disease. Anyone who claims that their diet/treatment/drug/fruit extract will 'cure' MS, is either deluded or a fraud and anyone who rubbishes something that works for others, is wrong, needs to take a deep breath and learn some humility.

In the end, what we'll really need to see is proof that gray matter atrophy in MS is stopped by something. White matter lesions don't indicate it, symptom relief doesn't indicate it. The only real, solid measures of continued MS progression are brain atrophy, continued disability and rising EDSS scores (and possibly iron deposition) That's the problem...and why remission in MS can look like "the cure" but maybe it's not. And why symptom relief can seem like MS has been stopped, but brain atrophy continues, unabated.

Now...to someone with MS who is receiving a remission and relief of symptoms, whatever they are doing at the time (goat's serum/prokarin/vitamin D/diet/chemotherapy) it is going to be their personal holy grail.

I can't prove that Jeff's angioplasty stopped his MS. He'll tell you he has symptom relief, no new white matter lesions, no new disabilities, he's mountain biking in 90 degs, working full days, and he feels good-- 19 months since his first treatment.

What's the answer? I dunno. But I do think that MS patients deserve the chance to learn if venous insufficiency is part of their MS.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS