This Is MS Multiple Sclerosis Community: Knowledge & Support

Eric, I apologize if you did not like what I wrote.
Anyway, here is my issue and I dont think it is even linked to MS alone.

I too don't want govt to sponsor patients for testing CCSVI condition.

CCSVI is a perfect case of a promising discovery that got completely buried.

Why - because people who have money will not fund research into it.
Why should they? I would say, in a capitalistic world in which we live, it would be totally unfair.

The same people who want it to fail will always say
- more research
- anecdotal evidence
- placebo
- normal people with CCSVI

In normal circumstances, this is fine (I mean who cares) since normally we would have someone else with deep pocket who can benefit from this.
But this is not the case with CCSVI.

When a situation of this kind, I think it becomes imperative for govt to step in. Now they won't easily saying its not our job.
Now it is left to people like Drs like Zamboni, Dake etc. to put their carrers at risk just because they care about MS patients.

As someone said, extraordinary situations need extraordinary measures.

Let me close by saying that the research to isolate genetic mutations in lung and skin cancer was sponsored by a charity organization.
That should tell a lot about era in which we live.
All those big speeches, tall claims ... are just an eye wash. Its a rotten system in which we live ...

We MSer's at least have strength in numbers unlike orphan illnesses who don't even have the numbers to justify big pharma or the manufacturers getting involved. We too have a Society that we can put pressure on to fund investigations. We have stent or balloon manufacturers who could make a fortune if this pans out. Research has also been conducted on inosine, Vitamin D, Swank diet, and other things that won't make big pharma a lot of money. Research CAN and DOES occur outside of a profit motive, I'm not quite as cynical as you.

I just think that we can't discard our demand for scientific method because we think Zamboni is "on to something". We need to be even more insistent that this is investigated properly. We need research results that we can rely on and have confidence in. We need this so that situations like Rici's don't occur where something bad happens and no one can help. If this is the "real deal" for us, then I'd like something less than a 50% failure rate for the treatment option. We see Dr. Sclafani improving his technique now as he forges ahead in uncharted territory. We need research and we need trials and we need publications so that everyone can learn from one another. And I want money to go for all of these, THAT is where we'll get more bang for our buck at this point, in my view.

We do have a lot of strength because many of us msers are in powerful positions. I would not want a sleezeball lawyer like Tony Merchant to be taking this on. We do need to get together and start putting pressure on proper testing being offerred for us. This situation, I say, is ridiculous.

I was once a positive person and then MS hit me.
Though my negativism is towards govt to whom unbiased viewpoint should be of out most importance. What irritates me more is the fact that I pay good amount of tax to this defunct govt. The money is not used directly or indirectly for my welfare.[/quote]

In order to get scans, under the medical services plan, the link will have to be made - by studies. I can not get the scans under insurance (because of the lack of an accepted link from MS - CCSVI, not CCSVI - MS symptoms), so I paid for them. If the Doppler and MRV prove conclusively that I have CCSVI, there is no doubt that I need to be treated. If I am treated, and have relief, there is another anecdotal case of the link, but not proven.

It's a chicken-and-egg thing to the bureaucrats. Think Tweedle-Dum, and Tweedle-Dee...[/quote]

I see what you mean, Johnson. But if a link were made between treating CCSVI and alleviating MS fatigue (which should be an easier link to make), couldn't you get insurance then? This is an honest question, not rhetorical or hypothetical.

Correlation does not = causation

There appears to be a strong association between MS and CCSVI. But that doesn't mean one caused the other or that one affects the other in any way. For all we know CCSVI and MS are just two conditions that occur together. A cause/effect has not been established yet. We desperately need a study to show that REMOVING CCSVI improves the neurological condition of those with MS.[/quote]


Let's assume that these conditions occur together, we should still be able to get treated and be covered for it. MS and fatigue go together and we have dugs for that, MS and bladder issues go together and we have drugs for that, MS and pain go together and we have drugs for that . . . you get my point.

Unfortunately, I'm not sure this is worth going to court for because of the time it will take!

I agree with Eric. More research is needed. To do research you need money: pharmas won't help us but all the money raised by us MSers, our family members, friends, colleagues, .... and given to our National MS society should be used, in part, to "fast track" that research. After all, their sale's pitch sounds more or less like this "to find a cure for MS, we need to do research and to do that we need your contribution". You have the money now so let's do research, shall we ?

_________________
________________________________________
RRMS diagnosed '92; both IJVs ballooned and stent in azygos March 31st in Katowice, Poland.

Until they test about 3000 people with MS for iron metabolism problems, CCSVI is not proven to be the cause of iron reflux into the brain. There are hundreds, literally hundreds of studies, showing that iron is in the brains of any person suffering from neurodegeneration. It is metabolism, specifically transferrin, that deposits the iron in the brain. The reflux may make it worse, but it is not the only factor. People seem to just ignore the fact that iron in the brain is not unique to MS. It is there in any conditions like Alzheimer's, Parkinson's, MS, Huntington's... I know everybody wants a simple explanation, but CCSVI/stenosis is a very oversimplified theory. People get very upset when I say this, but they have to understand that iron in the brain is not specific to MS and you cannot ignore that fact. I am not trying to be a noxious person, I am just trying to inject some reality into this whole thing.

Another reality check. The MS Industry creates billions of dollars. None of the drugs "cure" MS, just slow progression in some of the patients. Tysabri was removed in 2005 when 3 people came down with PML a brain infection. The drug came back and there is to date 42 cases of PML with 9 deaths. This was NOt reported in medical news, it was featured in the business/finance section. Tysabri costs nearly $40,000 cdn a year. It hasn't been tested over 2 years yet there is a whack of people (me included) who have been on nearly 3 years. This is the reality of the competition.
CCSVI is dangerous to the finances of the big companies that manufacture drugs and to the doctors who have made their names researching these drugs.
CCSVI should have a lot of doctors interested. There is a protocol of diagnosing it and a surgery to help that is minimally invasive. A lot of heart patients go back in for re-ballooning. It has not been a problem to redo procedures in other medical areas. But in MS stuff it is seen as a sign that CCSVI won't work. Why the difference? I think the misinformation is being put out by the drug companies who will loose lots of money if CCSVI gains more prominance.
I think it is proving difficult here in Canada because of the interlink of the drug companies/doctors/ms societies.
And who decides what research will be done, how quickly the research
will get done, and who does it?
I have no faith that decisions of CCSVI can be made independently of the people who stand to loose the most if CCSVI proves workable.

well said facet. you sir hit the nail on the head. people are over analyzing this theory and making it out to be more complicated than it really is. people need to seriously read all the research, not skim through it, before forming an opinion on the subject. many people (BIG PHARMA, NEUROS, MS SOCIETY) like to talk about there opinions without reading the facts first. they hear one negative story about CCSVI (non related death) and they beat it to death. why? because thats all they have to work with. pretty sad when you think of it.

from me to neuros, ms society and big farm: SPEAKING BEFORE YOU THINK IS LIKE WIPING YOUR ASS BEFORE YOU TAKE A SHIT.

_________________
STAY REAL MY FRIENDS

dx 1989, spms

Hi TFau,

I hope to make that link, and will then demand re-payment. I paid for an ultrasound yesterday, and will pay for an MRV tomorrow. Once I have the graphic proof of CCSVI, I will seek treatment in BC - right up to the day I leave for Poland. If I get the treatment here, and if it is successful at relieving my crushing fatigue, my stupefying brain fog, my double vision and oscillopsia, etc., there will be evidence. If I have to go to Poland, and have that relief, I will sue the government in small claims court for my costs. I was just saying to my wife that it is too bad that I never accepted disability payments, as going off of disability after treatment would be pretty good evidence of efficacy.

_________________
My name is not really Johnson. MSed up since 1993

Facet, Markus, Jonhson;) You said everything i think.

1- people are naive and belive in the good will of : doctors, ms society, and pharmas...
2-CCSVI has been recognize by vascular doctors as a pathology. If you have ms, and you have ccsvi... then you are not as a person lookinf for links.... You must be teated. Your job is to find someone who will treat you. People dont read medical paper... it is evident.
3- I suffer so much everyday since 12 years...I feel evry day like if the day before i would have going thru the new york marathon the day before. it is becoming harder and harder to teach everyday... My brain is so foggy...sometimes. I feel alone in this suffering because everybody around me see me as an angus beef AAA. I'm half blind, i,m ok to walk... i dont have any visible disabilities... so people think i'm leazy... and when i stay home because my brain can not teach this day... some of my collegue think i'm just taking a day of to relax at home....
3- i have been tested. i have reflux in the left jugular. I have an apointement whit Simka in january 2011. I'm actually waiting for an apointement with an IR in montreal.... I'll try everything i can to be trated here in canada. If not, it is sure i''ll go to Katowice.... because i know i have vascular pathology and it imperative to be ''liberated''...

for all the other who still think we need to link ccsvi with ms... You have to know that a lot of sickness are treted with medication... that help the patient and doctor still not be able to explain how it works.....

CCSVI is a recognize pathology.

You said it babie,

I too teach and I don't LOOK sick. It is easy to judge people and I have learned a lot about that from being sick. I will never do that. My dad died from MS and he heard all of the time how well he looked. I think that's kind of like being kicked but I'm sure they don't mean it like we are faking. All I know is that I am tired from people making a lot of money off me being sick and I am willing to fight for it.

Val

Interesting discussion ( and i totally relate to the "you look so good comments").
Just a side note: I noticed that in California, many patients' insurance covered the procedure- not as an MS procedure per se, but as a "structural issue" that needed repair. Is there not an argument here- even in Canada?
Forgive me if I've repeated something that has already been discussed.

_________________
Katowice, April 7/8