This Is MS Multiple Sclerosis Community: Knowledge & Support

This is from ECTRIMS. After the recent research and discussions of whether CCSVI might be worse in cases of longer-term MS, it seems like a counterbalance to look at what Dr. Simka is finding. No correlation between severity of venous obstacles and age or duration of disease. That's what we'd expect to find, too, if CCSVI is a congenital malformation disease.

The finding that those with narrowed azyous veins had the most aggressive clinical course seems obvious as well, if it turns out that reflux in the azygous is most damaging to the nearby spine. The spine has less ability to rework and reroute and recover than the brain does, leading to more aggressive disease and mobility issues.

I think Simka's results are highly suspect as he makes his living off of CCSVI. I would like to see some independent results.

I beg to differ on how "aggressive" is measured in MS. Most disability scales are based purely on walking and other physically measurable problems. The more difficult problems to measure are mental and emotional. I have no "physical" disabilities except double vision. But I have had terrible pain and fatigue and insomnia, and emotional problems. BTW I can run, jump, swim, have no numbness etc etc.

I have at least 40 lesions mainly in my frontal lobes.

My neurologist told me he diagnosed a woman with MS whose only presenting symptom was short-term memory loss. I have always been a bit ashamed to admit I have MS because I "look so good". Sometimes I wish I had a bit of a limp so I would look like a person with MS. There is so much to learn about the CNS and MS. From my point of view I think most disability scales are useless.

ozarkcanoer

There is no such thing as "standard MS."

Wishing you had more apparent physical disability to elicit a different response is egregious, in my opinion. That says a lot about a person's character.

ozarkcanoer, I'm in a similar situation, I put quotes on my "mild" MS diagnosis because it's mild due to the lack of physical disability but it's not mild at all to live it.

With Simka's research though, I think he's classifying aggressive by the traditional EDSS scales with their emphasis on mobility and physical disability.

I forgot, too, that he's only finding azygous problems in about 5%, which is far less than some of the other investigators including Zamboni at 86%. Therefore I'd assume that the 5% he does find is really blatant bad azygous stenosis, so bad it wasn't possible to miss.

Just a note on the azogous. When I went to Albany a little over a month ago, they indicated that they were not finding the rate of stenosis in the azogous that Zamboni did. Most of my lesions are on my spine and my initial symptom (other than major fatigue) was foot drop so I assumed that they would find stenosis in my azogous. Not the case. They only found stenosis is both my juguars. I was stunned. When I asked them why they thought they were not finding the same rate as Zamboni, they indicated that it could be that Zamboni's study was too small.

CuriousRobot... Everyone wants to be understood.

ozarkcanoer

lol, actually emptied my bladder over that

Did you ever have a Haacke protocol MRV? I wasn't expecting azygous problems but my MRV showed reflux in the azygous. It might be a way to pin down if there are azygous stenoses going unfound and untreated.

Ozark... I understand you. I am tired of the "you don't have MS... you look great". I can physically perform any task so people don't think I have MS. Even from my own family... "it's in your head, maybe you should seek some counseling". WTF!!

The disability scales do not apply to me as well.

BTW, I was ballooned today!!! yipee! feeling a little better! coldness and pain has been reduced. Hell Yeah!!

Cece: Never have a Haacke protocol MRV. I did have MRV with contrast in Albany one month prior to treatment in Albany that did not show azygous issues. Believe me, I was ready to have them tell me I had azygous issues. They checked at least three times. I do not understand why I have mainly cervical lesions (few small brain lesions) without azygous involvment.

Cece: If they checked me via venography and agio and checked azygous and ruled out stenosis in that vein, would Hacke show stenosis that they did not find? Just a question as I do not understand how lesions are primarily on my spine with no azygous involvement.

With the Haacke protocol they also measure flow. So you get these graphs that show for each heart beat how the blood is flowing. In my azygous it shows that it starts out flowing forward at a rate of .5 ml/sec, then goes as fast as 4 ml/sec, then slows down and crosses the zero line and is now flowing backwards at a rate of -2 ml/sec at its worst at 350 ms into the cardiac cycle, then that slows down and crosses the zero again so that it's flowing forward again back up to a peak of 3.5 ml/sec. So that is definite reflux.

It's utterly fascinating, IMO. I've got the flow charts for my jugulars in two places as well as my straight sinus, but there I have no forward flow at all, only reverse flow.

MRVs are expensive but if insurance covers it, it's something to consider. This is specifically the Haacke protocol, done by someone with training. If I'd had the procedure and my azygous still showed reflux like that, that would probably mean something had been missed, to the best of my ability to understand all this.

edited to add: I also have a 3D rotating image of my azygous, but I haven't had it interpreted so I have no idea if it shows anything.

Then we should throw out most of the information we know about MS because those who publish make a living off MS

Who would collect and write the data if it werent for those who treat these patients.

Unless you are believing that dr simka is falsifying his data, The data will decide whether there is merit to what he writes.

Published papers are reviewed by peers, usually in a blinded fashion. It is the best system we have. I do not think that Dr. Simka should be ignored because he treats patients.

I don't "believe" that Simka is falsifying data, but just like when drug companies pay to do studies (the results are almost always in favour of the drug, I think something like 95% of the time) compared with independent studies (which usually show much less positive results), I would still like to see an independent study, as Euromedic is pulling in millions of dollars.



I'm sorry Dr. Sclafani, I'm just skeptical of everything.