This Is MS Multiple Sclerosis Community: Knowledge & Support

http://tinyurl.com/3qqedr5

No access to the full text. There is a mention in a news article about what was said in this editorial:

www.cbc.ca/whitecoat/blog/2011/04/15/ms ... -go-again/

The question "Have we found the cause and cure of MS?" struck me as deliberately overstating so as to ridicule. The notion of neither jumping on the bandwagon nor missing the parade is more moderate.

The paper says that Zivadinov used a single, unblinded technician. See I thought all the complaints about unblinded studies were referring back to the old Zamboni work. My bad. Sorry. I feel like the unblinded are leading the unblinded.

"In Oklahoma, not Arizona, what does it matter?" -I Never Been To Spain

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

I agree that CCSVI syndrome is not the cause or cure for MS, so what.
Does that mean we must not safely treat CCSVI syndrome ??
Neurologists are losing the debate over treating CCSVI syndrome so they are trying to move the debate to cause of MS.

My advice - stick to treating CCSVI symptoms, forgot about causes of MS, its too complex.

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

Hi Mark,
I do not want to play the devli's advocate, but what is 'CCSVI syndrome'? I am diagnosed with MS and I have 'MS syndromes'. I happened to have a stenosed vein that was dilated few monts ago but it got quickly restenosed and now I, just like many others who went through the operation, just hope that nothing serious will happen to me due to that.

We have lots of anecdotical stories about improvements, but I still do not know what is 'MS syndrome' and what is 'CCSVI syndrome'. Did they ever treat a person who has stenosed vein but no MS, how does he feel like after the operation?

Personally, I am disapointed with the results so far.

When I first read about it in Globe and Mail, CCSVI was presented as a possible cause of MS. And hence treating CCSVI would mean treating MS. Then a few months later I read that CCSVI is one of the factors possibly causing MS. Now, I am reading that CCSVI is not the cause of MS.

All along I have been seeing the whole spectrum of speculation about causes and effects. What makes the most sense to you? Do not be ruled by an arbitrary opinion with no reasonable explanation, just because somebody claims their degree gives them some kind of divine right of infallibility. Does it make sense to you?

We've got brains. Let's use them. Nobody's going to hand us the answer wrapped up with a bow. If we work at it we'll feel better about our decision.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

I did not get offended when I read this question, only disappointed that Zidanov's results did not confirm our expectations. Haven't most of us hoped that CCSVI is a major cause of MS? Isn't Zinadinov among the first ones who embraced CCSVI? We should clear out what we are treating with these operations in order to treat only those who most likely benefit from the operation and leave alone those whose problems can not be aliviated by this operation.

I think this whole thing is getting really messy as we saw improvements not just in fatigue but also in motor functions; however, we have not seen anyone who would have benefited from the procedure after one year. We also saw lots of complications and regrets after the operation.

My neurologist's sentence pops into my mind: "he has already seen so many cures for MS, but we are still here". I wish he is not right now.

Zamboni's original research showed improvements in patients at one year. This was angio only. This was also a peer-reviewed publication.


http://tinyurl.com/43uqwh2

Dr. Dake's research as presented at ISET showed patients continuing to see fatigue improvements even beyond what they'd shown at earlier visits. This was at one year.
http://tinyurl.com/3lvmy4x

I might be missing something, but when I read the threads here I got the impression that good guys are fighting against bad guys, just like in the fairy tales.

Don't get me wrong I still hold out hopes for CCSVI operations and I already went through one, but I know things are not black and whites.

Even dr Sclafani mentioned that he tries to get a neurointerventionalist on board with the treatment of dual sinuses, but he said that this guy is not a believer of CCSVI. We have to accept that there are well-respected professionals who have different opinion about the link between MS and CCSVI.

We should not accuse anyone of bad intention just because his opinion differs from ours. It remindes me those ages in the dictatories when you were not allowed to have a different opinion than that of the ruling party, othervise you went to jail. Reading only one side of the story is very misleading.




The initial stories of dr Z were very encouraging; however, we see much more of the contrary as well. I would assume if we were all symptom-free as dr Z's wife after the procedure, we would not be here. Do not forget that with RRMS you can be symptom free for many years even without operation.

Why couldn't others reproduce his good results? If we look at the big picture, wouldn't we have as many improvements with others not getting the operation? I think these are legitimate questions raised by neurologists and hopefully we can answer them through clinical trials. I think jamit initiated a thread about collecting those who have improvements after one year, but no one was found.

I see that we got some good results from IRs, but we should value the opinion and concerns of the other side as well. I do not believe in conspiracy theories.

CCSVI syndrome is:
Chronic cerebrospinal venous insufficiency (CCSVI) is a syndrome characterized by stenosies of the internal jugular and/or azygous veins (IJVs-AZ) with opening of collaterals and insufficient drainage proved by reduced cerebral blood flow and increased mean transit time in cerebral MRI perfusional study.
Taken from:
Zamboni P, and Galeotti R: The chronic cerebrospinal venous insufficiency syndrome.
Phlebology. 2010 Dec;25(6):269-79. PMID 21106999, doi:10.1258/phleb.2010.009083.

Please read the basics before pretending you know about CCSVI or ask questions which take just a bit of reading on your part.

MarkW

In reply to:
MarkW wrote:
I agree that CCSVI syndrome is not the cause or cure for MS, so what.
Does that mean we must not safely treat CCSVI syndrome ??
Neurologists are losing the debate over treating CCSVI syndrome so they are trying to move the debate to cause of MS.
My advice - stick to treating CCSVI symptoms, forgot about causes of MS, its too complex.

Liberation wrote:
I do not want to play the devli's advocate, but what is 'CCSVI syndrome'?

_________________
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

Mark, at least I do not pretend that I know about CCSVI this is why I was asking. I admit I do not know. I must inform you that in many countries the health care system does not accept CCSVI as a health problem this is why we do not get treated and this is why we have to go abroad and pay for the operation.




So, I tell you what doctors say. If you have a sort of abnormality in your body (e.g. stenosed vein), it does not justify a treatment unless you know it has some adverse effect on your health. As far as I know, this is where we stand now and this is why there is a debate among doctors whether these stenosed veins cause any of those symptoms we currently know as MS.

I think we should not pretend that we know more than doctors do and we should value the opinion of both sides. Personally, I can just hope that CCSVI operation can help me to improve my conditions, but I do not mix up my hopes with reality.

I wish you a good health.

This is true and it complicates things. One of the useful pieces of information I hear when people tell their anecdotal stories is the difference between what their course was and what it now is.

..

I am not pretending about my knowledge of the combined subject. Specialist doctors know their area very well but very few are expert in veins and MS, that is the problem.
Have you really asked a vascular specialist if you should leave veins stenosed ?? Neuros say they need more info. Vascular specialists either recommend treating the symptoms or keep silent in order to avoid annoying neuros.

Good luck Liberation when you undertake your venoplasty, the key is finding an expeienced vascular specialist (surgeon or IR).

MarkW

_________________
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

Hi Mark, I hope I did not offend anyone, it was not my intention, but I was addressed by the word of "pretending" and I just responded to that.

Yes, I talked to a few IRs, a vascular surgeon and even a neuro surgeon about the topic. Unfortunately, I did most of these talks after my first procedure. All of them were of the opinion that it is not a condition that should be treated; however, all of them understood that it is a hope for MS patients, so it was my choice.

There view was similar to that of the neuros that an abnormality in our body should be treated by operation only if we know that abnormality causes some damage to our health. We all know that we are still missing this link. The neuro surgeon was even more sceptical about this whole issue as he tied off quite a few IJVs when doing brain surgery without any complications.

all said, you are right becasue non of them are experts of these specific veins and MS. As a pharmacist you probably know much more about the other aspects of MS then I do, but I agree that it is a very complex issue.

sorry I got it twice