This is really the issue

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby blossom » Tue May 18, 2010 9:59 pm

mmcc, you have a lot of good points. i think we all could agree on most of them to a point. i myself do not want to be in court been there done it. with myself, i have for 20 yrs. questioned the blood flow to my head to many neuro.'s because of certain symptoms i have. only to be poo pooed. finally about 3 yrs. ago my pcp ordered a doppler of the arteries. then i find out about ccsvi--bingo!! here is a blood flow problem that vasc. dr.'s have been treating for many yrs. relatively safe, they open veins all the time for certain conditions. i'm sure through the yrs. there have been some that did not turn out so well. but they did not stop these dr.'s from doing the procedure. now, i have this weird pain in my head, i tell them that when i move my head a certain way i can hear the blood swishing, when i turn a certain way i i'm light headed etc. if i had not been diagnosed with ms they would look at it differently. because they say i have ms they won't let me get checked or treated. if i have screwed up veins then i should be able to get them fixed like anyone else. if it helps the ms great. for the irb or whoever to stop this is prejudice and i am being discriminated against. by the way, you say you are getting liberated soon. many heart felt prayers that you have great results.
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Postby BooBear » Wed May 19, 2010 7:20 am

MMCC, I don't disagree with your logic. Like you, I am willing to participate in a trial as well. I am willing to share my data for the benefit of others. I am willing to do about anything.

But that is not the point I make.

The controversy is whether CCSVI is the cause or cure of MS. I have only seen one blog- from Colin Rose- that disputes CCSVI altogether. To counter his one, largely inaccurate rant, there are dozens of research papers that support CCSVI's existence.

Stenosis happens in varicose veins. And if I had varicose veins, I could get them repaired- no issue.

Why, then, are we denied access to this treatment? If there is stenosis, particularly with blood reflux back to the brain, why can't I get it repaired? There are hundreds of papers that illustrate the issues caused by excess iron in the brain- but the medical community won't allow me to get this fixed?

As you accurately state, insurance companies, pharma and yes, even doctors, all run a business. MMCC, I believe that none of these entities are more concerned with the risk to us than to the risk that Dr. Zamboni, Dr. Dake, Dr. Scalfani, Dr. Simka and all the others are right. If the procedure does in fact cure or significantly cease advancement of the disease, then the quarterly doctor visits, expensive treatments and monthly drugs are not going to be necessary. I believe THAT is the worry that is holding this back.

Perhaps I am cynical, but there isn't another reason that the medical community would not allow us to be treated.
Three veins angioplastied.  One renewed life.  
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Postby mmcc » Wed May 19, 2010 6:44 pm

blossom wrote:mmcc, you have a lot of good points. i think we all could agree on most of them to a point. i myself do not want to be in court been there done it. with myself, i have for 20 yrs. questioned the blood flow to my head to many neuro.'s because of certain symptoms i have. only to be poo pooed. finally about 3 yrs. ago my pcp ordered a doppler of the arteries. then i find out about ccsvi--bingo!! here is a blood flow problem that vasc. dr.'s have been treating for many yrs. relatively safe, they open veins all the time for certain conditions. i'm sure through the yrs. there have been some that did not turn out so well. but they did not stop these dr.'s from doing the procedure. now, i have this weird pain in my head, i tell them that when i move my head a certain way i can hear the blood swishing, when i turn a certain way i i'm light headed etc. if i had not been diagnosed with ms they would look at it differently. because they say i have ms they won't let me get checked or treated. if i have screwed up veins then i should be able to get them fixed like anyone else. if it helps the ms great. for the irb or whoever to stop this is prejudice and i am being discriminated against. by the way, you say you are getting liberated soon. many heart felt prayers that you have great results.
Why didn't the doctor do the procedure when they found that you did have a problem???

I agree with you that if they tested you to see if you had blocked veins, then they should treat it. Why did they test you if they weren't going to do anything about it?
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Postby belsadie » Thu May 27, 2010 1:12 pm

We just might have to be" smarter than the average bear" [remember that one] and find out just what symptoms to report that would direct the referral to be tested for venous insufficiency in the brain. Certainly not to mention MS. We're kind of like the plague victims in the Middle Ages.
Any ideas out there?
I'm about to go do some research of my own.......
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Re: This is really the issue

Postby frodo » Thu May 27, 2010 1:48 pm

BooBear wrote:http://www.theglobeandmail.com/news/national/legal-fears-thwart-doctors-bid-for-liberation-from-ms-pain/article1550377/

Amazing that lawyers want to stop procedures for fear of liability, yet have no fear of a lawsuit from a patient developing PML from Tysabri use.


I think that the problem is that they are not afraid of a lawsuit from somebody that gets his treatment denied.

Initiatives like the class lawsuit that some people are proposing in other threads are necessary.
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Postby BooBear » Fri May 28, 2010 5:48 am

Frodo, I tend to agree with you.

I am trying to think of the right angle for a class action here in the States. The ADA approach is intriguing; however, I need more work done to see if an attorney would be interested in this approach as well.
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