This Is MS Multiple Sclerosis Community: Knowledge & Support

Doctor;

Considering that each day is lost (assuming the relation CCSVI <=> MS) it is just common sense to have the catheter veno / and / fix now... If further progress are made; further analysis and technical will be deployed / developed / invented and this procedure is not (that is subjective opinion) risky. therefore we could be "updated" after this first intervention?

Thank you for your time,



(Sorry being such a pain)

Cece quoted

from "Thyroid function in multiple sclerosis"

Have had low thyroid for years--concurrrent with all the MS symptoms-- showed same as in this study--very low T3 in relation to T4--
But did also have chronic severe liver problems.

Thyroid extract gets bloods to correct levels, but still some of the symptoms were not relieved until started with Inclined Bed Therapy.

Understandable outrage at NMS society, but I think there are other threads for that. This thread is already 160 pgs, so lets lkeep it on topic. (This from one of the worst at that, I admit. )

Dr S, I only just started reading your Forum after listening to your Presentation in Italy. I've been reading daily topics on TiMS and have learned a lot about the disease and especially CCSVI from this site, but I've never had a question to ask. Having just gone through pretty much all of this Forum in the last couple of days, I suppose my only question would be - Are you the only Doctor on here ?? -- because some of the info and detail talked about here makes me glad I didn't have a dumb question to ask !!!!!!!
Anyway I still don't really have a question but only a thought that I'd like to share with you. I am involved in M.S. purely as an "in-law", my Wife is the MS'er: now if she wanted to get laser surgery on her eyes, or if she wanted a face-lift, if she wanted larger breasts or butt cheeks, or if she wanted to get rid of some belly fat (NONE OF WHICH SHE NEEDS TO DO I.M.H.O. !!!), she could do it. If however she wants to get badly collapsed / blocked / tangled veins in her neck fixed, well too bad, she can't because of some inane requirement that it be a proven and tested procedure. So for vanity, go ahead, for the sake of your quality of life, tough luck !!!!!
From reading this Forum, you have many, many people who need your assistance, my Wife being one of them, you appear a dedicated gentleman who wants to help the MS Community but are being denied the opportunity to do so by the "establishment" who have come up with some ludicrous excuses to put down your application for approval to do this work.
Might I suggest that you tell the "establishment" to go screw themselves, and set up your own "shop" to do this work - call it Sclafani Plumbing or (to be serious) The Sclafani Institute; I'm not even suggesting you want wealth, but have you ever thought how much you could bring in through something like this - say only half of one percent of North American MS sufferers came through your Clinic in a year, and lets say you (being charitable) charged $5.000 for imaging and treatment, you would be doing sales of nearly $12 MILLION. That would allow you to expand to treat more people bringing in more dollars to allow additional centers to be opened.
I know it has been suggested and I believe you even hinted that it was a possibility, but please REALLY CONSIDER IT, for the sake of all the Dr Sclafani Fan Club, for all the MS Sufferers in North America and from my perspective, most importantly for my Wife . Thanks Doctor.

Back on June 14th:

Welcome to the thread, welshman.

_________________
"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

Any comment on the class action suit against Dr. Hubbard?
http://ccsvi-ms.ning.com/profiles/blogs ... tle-begins

And... congrats on the 200,000; we love you Dr. S!!
AH

"We’ve just learned today that a Los Angeles class action law firm has prepared an action against my dad. The claim will be “snake oil treatment duping vulnerable patients."....

(unrelated to above)
Some people pillory DrS, others have higher praise:

Some think his name is Steven & he lives in New Jersey:
<shortened url>

And some translate him into and out of Danish with relatively little wear-and-tear:

<shortened url>
That's all I've got.

_________________
"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

I'm crushed about Dr. Sclafani being shot down. My friends know I was counting on that. So one asked me, "Why not go to a private clinic for this procedure?" Aside from telling her that I didn't feel that they were as well equipped to handle all the variables, I didn't know what to say." She thinks I should go for it.

Pros or cons, anyone?

LauraV
You need to start a new thread for a question like that--this is supposed to be a thread where we present questions to Dr Sclafani --

I thought I hit the "new topic" key. Sorry.

Hi Dr. Sclafani,

Hope you have a wonderful 4th of July weekend!

Hope you can stop by soon to say hello!!

Hope you find time for the 3Rs!!!

Hope you are very happy!!!!

Research, research, and more research?


LauraV, I made the post right above yours, and in it DrS had said that he understood why people were choosing private clinics, since university hospitals aren't doing enough trials, and since time waited is brain wasted, or something to that affect, it is a translation from Danish. All you have to do is edit your question from 'pros or cons, anyone?' to 'what do you think, Dr. Sclafani' and you'd be set...

_________________
"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

Hi Dr. Sclafani,

Have you seen this web page that shows the results of pre- and post-angioplasty fMRI brain scans on a single MS patient who was treated for CCSVI?

Here's the link:

http://www.hubbardfoundation.org/multip ... _fmri.html

Here's some text from the above webpage:



Not exactly a question, I just thought you might want to see this in case you haven't already.

Mary Ann

_________________
DX 6-09 RRMS

That is incorrect. the azygous can suffer from malformation in the presence of normal jugulars. however it is thought that two venous outflow obstructions are necessary in order to have problems

ok ask away

I think a print based atlas would be useful . I am thinking of an atlast of the face of ccsvi. in Particular images of you patients for the doctors to identify with, followed by doppler, MRvenographic, catheter venographic images of ccsvi. That is why I have encouraged the kamikaze to join me. There are studies that show that if you add a patient's face to the digital folder of images of a diagnostic test, you get more detailed descriptions and better reports? It just goes to show that empathy goes a long way. The goals ofmy atlas include getting doctors to see you as human beings and not just patients


ok, here it is. send your images to

Salvatore ja sclafani md
Department of Radiology
Kings county hospital center
451 clarkson avenue
brooklyn new york 11203

remember to write your history, your treatment and anything else that is relevant. I will scrub all patient information from the images. if you want to be listed as a contributor, please let me know. if i use your images i will do so.

please do not send me any originals. Please do send me a letter stating that you give me permission to use the images in an atlas without obligation or expectations.

i will try to create a coffee table book that can be of interest not just to doctors.

all profits will go to funding ccsvi research


thanks