This Is MS Multiple Sclerosis Community: Knowledge & Support

This is not scientific in any way. Just yet another testimonial:

A friend of mine went for angiography after having been diagnosed with CCSVI using ultrasound. The angiography came up clear. No obstructions.

Strange? Well, it is. But that is half the story. My friend went back home and the following days started having some strange feelings of heat in his arms, less fatigue and less brain fog.

A few days later, he went back to hospital to finalize some paperwork. He told the surgeon about these positive feelings. The surgeon, very inexperienced at that time, told him that he found it quite difficult to enter the IJVs with the catheter. He speculated that there could be some membranes which were broken when the catheter entered the veins.

This speculation was, later, confirmed by ultrasound. The venous insufficiency was a lot better and some pieces of the membranes were now clearly seen moving as the blood flowed.

My friend, without knowing that he was liberated, felt immediately some positive changes. This is interesting because it can't be due to a placebo effect.

I just wanted to share it with all of you.

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Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

That is some good testimony. I can imagine too the disappointment after going in for this and having nothing found. Congrats to your friend on his accidental liberation!

interesting, especially with the placebo effect in mind.

Does an accidental liberation cost less than a deliberate one?

BTW I think the placebo effect is overstated. If it can cause such dramatic results as some folks experience after liberation then why don't they just sell us some placebo pills and call it an MS cure.

No obstructions yet ultrasound confirmed what? huh?

at first read, my understanding of the post is that the testing procedure had broken/cleared obstructions without detecting them at first.

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

So the procedure broke up obstructions that were never detected?

They were detected by the initial doppler testing. They were not found during the catheter venogram. Unexpected improvements led to a follow-up doppler, which showed the ccsvi that had been present during the initial doppler had now been fixed.

Gotcha CeCe, Thanks.

Yes, it did. Since no more equipment and tools were used, my friend was charged a simple venogram. Nevertheless, he will have to properly clear up the veins sometime in the future.

Cece and JL, that's exactly what happened. My apologies for my English.

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Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

This is a very interesting and it corresponds with what my daughter's IR found in his patients so far.

I asked him that now that he has done a fairly good number of patients, what was his success rate. Was he seeing many patients improve?



He said that in the patients that he has done venograms on 80% had lesions that he could identify.

But he further stated that oddly enough, most of the other 20% (the ones without identified lesions) have shown clinical improvement too.

He at first thought that this was placebo but now he thinks that maybe they had paritial obstructions that could be missed. He says he inflates the balloon anyway.

Some of these improvements have been objective and measurable.....
strength, vison etc. Not just subjective improvements.

I asked him what he thought was the cause, he said perhaps fine webs but honestly shrugged and said he didn't know.

I guess tha bottom line is.......improvements are great even if the exact vessel lesion & cause eludes identification.

I am wondering if some of the "sham" study patients that are in the sham part 1/3 will see improvements due to the catheter wire or dye opening up the vessel enough to improve venous flow?

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Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-

This would really mess up the benefits attributed to the placebo group and erroneously inflate the placebo effect instead of acknowledging an actual benefit that resulted from removal of an unobserved obstruction. That would be unfortunate.

Very unfortunate. It's been discussed here before without any solutions. But what percentage of CCSVI are membranous sorts of things that could break with just a catheter going through? We don't have the numbers yet. Maybe it is too few to be a factor.

And maybe this is why Dr. Sclafani is right... too soon for double blinded studies in this. The doctors have more to learn before we're ready to cover their eyes.

I am with Prof Sclafani on this. Double blind studies are stupid at this stage as a validated diagnosis method is not agreed. I cannot get my head around how a double blind study would be designed. Anyone try to explain what the study design would be.

Kind regards,
MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html