This Is MS Multiple Sclerosis Knowledge & Support Community

sofia wrote: There is so much CCSIV does not explain, it does not explain how MS is clustered around the world. It does not explain why there is a higher percentage of MS patients born in spring. It does not explain why smokers are over represented, it does not explain, why people with MS is low on vitamin D. But maybe these factors can have an impact on your veines, and how they develop.

CCSVI is a condition that tries to explain why people end up with MS. Its new area and still lot of research needs to be done. That will probably take another decade to get answers. Remember that after 60 years of research on MS on the immune path, it was still classified as a disease of unknown origin. CCSVI probably answers that part conclusively.

Having said that, if you take an example of cancer, it is not clear why the cells change from healthy into cancerous cells. Why they multiply so fast. That does not preclude available treatment.

I think human body is too complex to understand even though its available for everyone to see and study. Scientists still don't understand how baby development takes place. That's the reason why we keep seeing reports that X is harmless for baby's growth one day and the same thing contradicted the next day. The main reason is that the fundamental process is still not understood.

FlashHack wrote: If only mom had taken a vitamin D supplement during those long winter months, I probably would not be writing this.

TELL her to apologize !


Be strong, use the Force everyday!
Marc

Apologize?! I can't even bring myself to tell her of this amazing pathogenesis because of the maternal guilt it would undoubtedly illicit. No, this will never be spoken of in front of dear old mom.

MarkW wrote:Prof Zamboni on 14 April 2010 in fact argued that neurologists should agree that:
All pwMS should be treated on compassionate grounds if existing therapies have not stopped progression of MS.
If your MS progression has been stopped by a current therapy then the best advice is to wait for further research. If your MS is still progressing then treatment of CCSVI using balloon venoplasty was Prof Zamboni's advice.

Kind regards,
MarkW

Thanks for clearing that up Mark. Musta only remembered part of the interview, lol.

MarkW wrote:Prof Zamboni on 14 April 2010 in fact argued that neurologists should agree that:
All pwMS should be treated on compassionate grounds if existing therapies have not stopped progression of MS.
If your MS progression has been stopped by a current therapy then the best advice is to wait for further research. If your MS is still progressing then treatment of CCSVI using balloon venoplasty was Prof Zamboni's advice.

Kind regards,
MarkW

Yes, in relation to Zamboni's statement agree on compassionate grounds everyone should be treated. But on the other hand, why should one not stop it further and get rid of some symptoms that by no way could actually be permanently stopped via medication. The terminology "if your progression of MS has been stopped" is in little way realistic. In fact if really 100% stopped and fully symptom-free forever, would agree, lets wait

There is however in my view unfortunately no medication so far that really "stops progression 100%" (only scientifically proven that slows down progression at 30-40% max)neither are most of us with RR completely symptom free on medication. The term "remitted" in RR does somehow mean we remitted on most of the relapse symptom, but are maybe still slowly progressing on certain other symptoms or some remainders from this relapse...at least in my case...

I have not seen any MS progression curve model where the curve of MS progression goes down permanently...at the max from the ABCDE models the scale line goes more slowly up in time...even in case of RR...there may be some rare stable cases that have one relapse and never ever anything again.

So if we are still progressing balloon angioplasty advised, would say could be case of 95% people diagnosed with MS or am I exaggerating?

Zeureka wrote:The terminology "if your progression of MS has been stopped" is in little way realistic.

Zeureka, i think that only that would be enough
One suggestion though: replace the "is in little way realistic" with "in no way".
And we all know what crappy statements like this are ment for.
Zamboni is a smart dude and he knows many of us are smart enough to know better.
Everything else is to feed the media and keep the good work going.

costumenastional wrote:

Squibbles wrote:I had the procedure last week and have not felt well since. But I will wait before I post on the tracking thread saying that it has not worked for me...

Thank you friend. I wish you my best.

Thank you Squibbles and Livabird for your testimonials! Think important we post all experiences whether pos or not so pos to give the full picture...I will try to report as much as possible on facts after my procedure end May in CCSVI tracking on TIMS. Will write down current symptoms by type and see systematically whether and when improvements on which symptoms occur. If none in first week or month or never will also report. The reasons could be multiple, i.e, if one has more damage in spinal cord than brain, some symptoms might not relate to opening up a jugular vein, but noone really knows yet. If related to increased oxigenation of brain, could still have an impact. And could be different from case to case depending where the myelin damage is positioned and whether reflux or slow flow is present etc...

so think to get closer to the puzzle, the more pos or neg reports with background on lesions and progression stage of MS etc...can be helpful.

And lets hope Livabird we hear more Livabirds! As what you describe is fantastic and Squibbles, that you will not have to wait for too long for some improvements to report about. In Kuwait they reported on certain improvements only after 1 month.

sbr487 wrote:

sofia wrote: There is so much CCSIV does not explain, it does not explain how MS is clustered around the world. It does not explain why there is a higher percentage of MS patients born in spring. It does not explain why smokers are over represented, it does not explain, why people with MS is low on vitamin D. But maybe these factors can have an impact on your veines, and how they develop.

CCSVI is a condition that tries to explain why people end up with MS. Its new area and still lot of research needs to be done. That will probably take another decade to get answers. Remember that after 60 years of research on MS on the immune path, it was still classified as a disease of unknown origin. CCSVI probably answers that part conclusively.

Having said that, if you take an example of cancer, it is not clear why the cells change from healthy into cancerous cells. Why they multiply so fast. That does not preclude available treatment.

I think human body is too complex to understand even though its available for everyone to see and study. Scientists still don't understand how baby development takes place. That's the reason why we keep seeing reports that X is harmless for baby's growth one day and the same thing contradicted the next day. The main reason is that the fundamental process is still not understood.

Agree. There are many processes that could link into CCSVI that cannot be explained yet and certainly require further research...but also the "ONLY" neurological classical model does not provide explanations for everything yet...so why not start research for a puzzle of both...
And if promising results on quality of life in first CCSVI research and really VERY LOW risk of angioplasty I do not see any logical reason why to take the HIGH RISK that MS patients continue progressing and feel worse in the meantime before we fully or partly know more on the scientific reasons/interactions/mechanisms...necessary for long-term and then improving the basic therapies of course

Lately in the media I've heard way t much talk of ms symptoms. How fixing ccsvi helps this symptom or that. Irrelevant. It's the progression we're after.

In my opinion there is never any healing in ms. No remission. Just reorganization. The cns figures out how to do a task in a new area. If this is true then I want to know if anyone has done any work on conscious reorganization, trying to get the leap to new areas to happen.