This Is MS Multiple Sclerosis Community: Knowledge & Support

My MS care, including my 13 infusions of Tysabri per year (I have gotten much worse since I started Tysabri 3 1/2 years ago, but I'm afraid to stop it and take the chance of getting even worse), my Ampyra (which does very little), my doctor's visits, MRI's, etc. is costing my insurance company about $100,000 per year in a good year when I have no complications (falls, broken bones, physical therapy). I, too, have wondered if insurance companies wouldn't be happy to learn of this treatment which could potentially save them hundreds of thousands per year.

Maybe the insurance companies will crunch the numbers or do a focus group...there are many many MSers who are quitting their drugs post liberation...that has to add up...but yes this is a new worry that I hadn't had before.


Did everyone catch this? I think our good doctor is back in the saddle.


But there must be some interplay between pressure and flow? I am thinking of the barrel, where the out-flow is blocked so the in-flow is lesser, but if you turn up the inflow and force more in (higher blood pressure) it's still not going to get past that blockage but there will be more going around it and through the collaterals and leaking out the sides? Which is not a good thing?


I googled this yesterday and came up with: neoplasms (tumor); jugular aneurysm; pulsatile tinnitus or right carotid abnormalities; early morning headache and vomiting; this one: http://www.ncbi.nlm.nih.gov/pubmed/19540711; persistent left superior vena cava; and jugular bulb venous thrombosis caused by mild head injury. None of which I have.

(You know, if no one else is here, my post is just going to get longer and longer.... )

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

Dr Sclafani
appreciate your reply.


The colour Doppler did not include any analysis of the Azygous veins, so I don't know if there is any problem there - I realise the scan I had was more to see if there were any abnormailities prior to travelling to continetal Europe (Poland perhaps) so at least knowing I had some abnormaility was helpful. Unfortunately the scan was sent on CD to my GP and I did not receive a copy, except for a short summary written report. I am living in Ireland so I'm not sure if you can exempt overseas people?!! - not sure what IRB is but suspect it is an approvals board of some type..........I intend seeing my GP in the next month to discuss it but I can't imagine I'll have the smarts to anonymise the CD itself when I do get a copy.............

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Concussus Resurgo
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RR-MS dx 1998 and Coeliac dx 2003
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Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.

I fully understand that it may be difficult in your situation to get approval for your trial on this basis - and also understand the financial aspect and immense costs for a clinic

But in Italy in order to get general green light for making treatment a possibility upon private payment it seems the Ministry of Health accepted - or is at least now considering - not necessary to show/prove symptoms, but to prove the CCSVI condition in itself. The Ministry had expressed/concluded in this meeting that as long as the stenosis is quantifiable in a patient and as long as it is found that the type of stenosis leads to an alteration of the hemodynamic balance taking into account vene and artery components, that treatment should be a right for a patient to ask for in a hospital(..."se questo tipo di stenosi comporta ad alterazione del equilibrio emodinamico che tiene conto di due componenti venosa e arteriosia").

The symptoms and in particular the potential MS was pointed out to be secondary...as for those, the Ministry expressed first proof would be needed by clinical trials underway.

However, it was pointed out by the Ministry that this new aspect to be proposed for CCSVI treatment would not happen over the summer...and lets wait and see now...I hope we see and do not wait tooo long...as Italian summers are usually long...and this winter was far too long as well!

Isn't it actually risk of shutdown vs treatment of half and delayed treatment of the other half?

It's a little brighter way to look at it?

Especially if the reality is 'certainty of shutdown vs treatment of half and delayed treatment of the other half.'

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

What happened to the good ol' Case Report? There are thousands that have been published but I've yet to find one for a treated MS patient. What would happen if every physician who has treated CCSVI submitted one Case Report each? I know it doesn't count for much, but if they were coming from everywhere wouldn't it be something at least to show improvement or overlapping symptoms between MS and impaired cerebral circulation?

Speaking of Case Reports, I read one on dural sinus thrombosis and the surgeon stated the cause of the thrombosis was IJV stenosis, citing that venous stenosis promote turbulence and progressive thrombosis and should be treated with safe and effective balloon angioplasty. It was published in 1996. Symptoms included lethargy, blurred vision, balance and coordination issues, sensory and motor dysfunction, to name a few.

Since my sister has been treated (RIJV only as the azygous was never checked and the left is still a big question mark) she has felt on nine separate occasions a sensation of something slithering across the inside of her forehead, to the temporal bone, behind the ear and down the neck, all the while accompanied by pressure as it moves. Each time she feels it get 'stuck' behind the ear (stenosis was ballooned), the pressure becomes painful, and with diaphragmatic breathing it finally continues its path down her neck and no longer feels it once it passes below the clavicle.

I have heard similar stories from 2 other people, and Denise Manley of the US was found to have a calcified clot in one of her IJVs. Do you agree with the statement (application of Virchow's Triad?) that venous stenosis promote turbulence and progressive thrombosis?

Thank you so much for your time and compassion.

what about people awaiting a diagnosis? I was mis-diagnosed for 10 years, and then when I went to a new neuro, he had a strong suspicion it was MS, but I did not get the diagnosis until after an MRI. Could you grab patients "suspected" of MS and first test them for CCSVI; instead of the MS defining tests such as MRI?

Hi Dr. Sclafani,

Happy Monday to you! I hope your weekend was full of rest and relaxation.

A question for you: Did you have an opportunity to speak with Dr. Zamboni about malformations of the dural sinuses?

Thank you very much.
~HP

Okay I'm confused again. I thought the whole left vs right femoral vein thing was related to this? Different disease, same veins?

I think it's this: no association means you are not more likely to have May Thurner disease if you have MS or more likely to get MS if you have May Thurner disease. (Optic neuritis and MS are associated; Kidney cancer and MS are not.)

That being said, if by unfortunate chance you happen to be stricken with CCSVI and May Thurner out of the general randomness of life (just as you might be stricken with MS and kidney cancer but not consider them related diseases), then having May Thurner is probably making your MS worse and so both the May Thurner and the CCSVI need to be treated, separately.

Dr. Sclafani's explanation earlier was that May Thurner disease causes reflux around the blockage in the lumbar veins and so blood tries to reroute through the azygous, which is a no-go if CCSVI has also blockaded the azygous. Hope this helps.

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

Article in today's NYTimes... Good Exposure!
http://www.nytimes.com/2010/06/29/health/29vein.html
Nice quote from Dr. S!

Good article!

I especially love that our Dr. Sclafani was quoted. ^5, Doctor.

Also, I'm glad I learned about the nonprofit CCSVI advocacy organization Reformed Multiple Sclerosis Society--I love their name! Being in this article will be terrific for them.

Thanks for posting this, CharW--you'll find this post on your other thread, too.

~HP

not to worry about anonymization. I would never reveal any personal information. While I await my own liberation (to treat), i want to make myself useful. I would be happy to look at your ultrasound

i like your sunny way of looking at it.