DrSclafani answers some questions

[bmk1234]

tonite at the 150th anniversary of downstate medical school i had a conversation with the chairman of pediatrics. I was trying to entice him to think about how we can test for ccsvi during childhood before the upstream effects become manifest. afterall, the ultimate treatment would be to genetically re-engineer the DNA to NOT form malformed veins.

The first thing to do i s to figure out a way to identify children and families of young ones. try to proactively find those people before their disease becomes manifest.

He was skeptical but curious about what is currently known, and he immediately was thinking about ways to address the question.

That is why I love academic medicine

Hello Dr. Sclafani
I have the family you speak of. My mother has MS, her sister has MS, Her brother probably has MS (not tested), my brother had MS (passed away 1 year ago (MS related), I have MS. My brother and I have 5 kids aged 13 - 23 that will probably develop MS. My aunt and I are already on your list. Let me know what I can do to help.
Blaine

[bluesky63]

If we're on your list and we bring our kids is there a way to set something up? I have kids who definitely at high risk from family history and from their own presentation, and like others I sit here emotional and hopeful that we could take action to 1) prevent damage, which is the most important thing in my mind and 2) contribute to research. Thank you from the bottom of my heart for your dedication and your inspiration and most important your action.

[Leontien]

Dear Dr. Sclafani,

I spend every day half an our in my infrared-sauna. I bought it to relax my muscles, but it's also good for the bloodflow and now I understand why I feel better in general since using the sauna.

I am already diagnosed with CCSVI and april 19th I will have my liberation treatment. I think it's good for me to continu going into the sauna after the treatment, but i want to be sure.

What do you think about it?

Thank you very much!

With kind regards, Leontien

[LR1234]

Not sure if a sauna is a good idea if you have stents....?? Maybe angio only is ok??

[PCakes]

bmk234.. your post should be sent out to the world.. how many of us were advised that "MS is not a genetic disease"?! .. and has the medical community tried, and failed*, to control this discovery and for how long? (Dr. Shelling) in recognition of the mass consequence?

*Dr Zamboni, Dr Shelling, Dr Salvi, Dr Simka, Dr Dake, Dr Haake, Dr Sclafani, Dr Godley, Dr MacDonald...the list grows... Cheerleader, CTV, the brave pioneering patients

[Leontien]

Not sure if a sauna is a good idea if you have stents....?? Maybe angio only is ok??

Thanks for the reaction! For now I'm just going to have angioplastic.

[larmo]

Dr. S.,
Are the drug companies working on a remyelination drug ?

I could see purchasing that, since it would be entirely 'elective' - if it was affordable. This is something the drug companies should take a serious look at. They make $8.5 billion from MS drugs in the US alone each year. Hopefully, they will lose a substantial portion to people getting CCSVI treatment. To imagine, a drug that will actually FIX what was broken !!!
Salk cured polio in the 50's and nothing spectacular at that level since, they are due !!!

[HappyPoet]

Dr. Sclafani, you are more than a hero -- you are a saint.

My 17 y.o. daughter has migraines which can be the presenting symptom in MS.

I'd prefer to wait until she graduates from college before pursuing CCSVI testing/treatment for her. Do you see problems with waiting four years as long as she doesn't show any new neurological symptoms? Thank you very much.

Also, what do you think of the idea of an umbilical cord wrapped around a new born's neck as being a possible cause of damaged jugular veins?

~HP

[L]

Dr. S.,
Are the drug companies working on a remyelination drug ?

I could see purchasing that, since it would be entirely 'elective' - if it was affordable. This is something the drug companies should take a serious look at. They make $8.5 billion from MS drugs in the US alone each year. Hopefully, they will lose a substantial portion to people getting CCSVI treatment. To imagine, a drug that will actually FIX what was broken !!!
Salk cured polio in the 50's and nothing spectacular at that level since, they are due !!!

Biogen have been working on BIIB-033 for at least four years. They released another press release about it earlier this year.

<shortened url>

At the time I thought that it was a coincidence that the announcement coincided with important CCSVI news but I was very naive to the methods of big pharma..

[lucky125]

Many U.S. health insurance companies cover MRV and ultrasound tests for CCSVI. If CCSVI is confirmed through this testing, will these same insurance companies cover the Liberation treatment if it follows an IRB?

The costs to insurance companies for current MS drugs is staggering. Even if the Liberation procedure was required every 18 months to address restenosis, it would still be less expensive to an insurance company than current drug treatments.

Are insurance companies following CCSVI developments? I know Big Pharma is and they don't like it!

i cannot answer how insurance careers will address this. THey are unlikely to pay for research into unaccepted nonstandard therapies or research that is randomized prospective double armed studies. . They often pay for procedures that are considered acceptable therapies in which some aspect is being studied.

I hope that they see the economic advantage to liberation but they will likely want to see more than one open label study that reports that it is effective.

My ultrasounds (pre & post), plus venogram and angioplasty were paid for by Medicare at GU. I don't know what procedure codes and dx codes were used. The billing person in vascular told me that she did her homework before submitting. Hope that helps.

[larmo]

Biogen have been working on BIIB-033 for at least four years. They released another press release about it earlier this year.

<shortened url>

Thanks L, good for us to know.

[girlgeek33]

Biogen have been working on BIIB-033 for at least four years. They released another press release about it earlier this year.

<shortened url>

Thanks L, good for us to know.

I've been reading about this remylenating drug, as I realized that was always going to be a piece oft he puzzle. I must admit though, this concept scares the crap out of me. I imagine it has to mess with the brain chemistry, whatever it does, I may wait until it has been out and proving itself for some time. Make sure it isn't like Tysabri with PML link or other such things.

[jr5646]

Dr. S - TY for answering our questions... I have really enjoyed reading this thread and am grateful you are here.....

Anyway, I've been thinking about the inherited possibility of MS/CCSVI also and in possible prevention in children of 1) Even developing Malformations and 2) Treating any malformations before MS rears its ugly head... From a complete laypersons perspective I can only draw upon my own experiences and take a stab at this for what its worth.

My thoughts on Vitaman D.. The pervalence of ms has been documented as the further away one lives from the equator the higher the instance is seen. Hence the vitiman D theory.

Remembering back just a few short years ago, prior to, and during pregnancy my wife was prescribed pre-natal vitimans. I guess folic acid promotes neurological health and is standard care now...

Wouldn't it be great if a vitiman could be taken (added) to the current prenatal vitaman to promote vascular/vein health?? If one even exists, that could prevent ccsvi from occuring in the first place??

Some debate a potential Vit D deficiency in MS, but I propose that the Mother may be deficient, instead of the person with MS and causes the malformation(s). The ccsvi congenital factor lead me down this road.

I for one was always in the sun growing up and doubt very much that I have a vit D deficiency... possible but unlikely. However my Mom (fair complexion) rarely was in the sun. This may explain a few questions regarding MS/vit D and /or ccsvi.. Birth month and ms has been studied too.. so perhaps being pregnant during the winter months is a factor also.. is it a certain trimester of pregnancy that the lack of sun (vit d) effects vein development?

Hopefully someday kids will be screened for ccsvi, heck we screen and vaccinate for everything else under the sun, so why not? - maybe non-evasive doppler??

Something thats also bothered me is that the bnac (buffalo) study hasn't found ccsvi in the same high numbers zamboni and others have.. I thought it would be interesting to study the ms lesions of those found to have ccsvi vs. those who did not.. The term venocentric has been used when describing lesions.. so do we need Tesla 7 mri's to study this? Since we see many other conditions that have the same symptoms, such as lymes disease, brain stem stroke etc., - do we need another sub-type of ms designated???

OK, now on to why do we see the 2-1 ratio of females vs. males developing ms??? Not sure on this one, but I remember reading somewhere that lung development occurs sooner in girls than boys... so premature female babies have a better survival rate than boys at the exact time of development (premature birth)... perhaps something similar occurs in the formation of the vascular system in utero???


On a side note (rant) - How about Biogen wanting to pair Avonex and/or Tysabri to BIIB-033 (Lingo-1) - which hasn't even been approved.. they tried to do that, unsuccessfully with Avonex and Tysabri.. GREED comes to mind...

No details are available yet on how the trials will be crafted, but Rhodes made clear that the company’s vision is for Lingo to be used in combination with Avonex or Tysabri. The idea is that those drugs can reduce the immune system’s assault on neurons, quieting the storm. That would give an opportunity for the anti-Lingo-1 drug to step in and regenerate myelin around the nerves

SHORTENED LINK

YET, we have to wait for a relatively benign ccsvi procedure... my vote is for the liberation treatment and lingo-1 afterwards... However, I find it incredibly difficult to believe that Biogen will come up with anything other than "lifetime" drugs...

[SammyJo]

Cheer or Marie posted this, on pediatric stenosis and later MS:

The origin of Dr. Zamboni’s work in Multiple Sclerosis began when he was a vascular surgeon in Sardinia, Italy. Sardinia is noted for its high level of epidemiology in MS in the general population. During 1987-1992, he noted a high prevalence in children with malformations of the jugular veins. His paper on this topic, “So-Called Primary Venous Aneurysms” was published in 1990. He noted AV fistula and a closed ring stenosis that could not be crossed by their blood in these children, external compression and this vascular anomaly appeared to be congenital. 20 years later, 90% of these children he studied have been diagnosed with MS.

[ndwannabe]

I'd prefer to wait until she graduates from college before pursuing CCSVI testing/treatment for her. Do you see problems with waiting four years as long as she doesn't show any new neurological symptoms? Thank you very much.

I would love to see what Dr. S answers to this. I, in my "non-medically-educated" mind would think that:

If CCSVI slowly leads to development of more and more iron deposits / brain lesions and when our brains had enough we start showing the full-blown MS symptoms... I would think - the earlier we stop the damage, the better?

What do you think Doctor?