This Is MS Multiple Sclerosis Community: Knowledge & Support

I believe that Dr. Sclafani wrote that he would let us know once he's gone into the office tomorrow.

I'll see if I can find something out and let you know... You have brought me to tears once again! And I was very, very touched that you are passing up your retirement for us!!!!

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Update - I've emailed off to family members I could find and posted on her page.... Let you know what I find out...

Dr. S, Please check your private messages about this. Thanks.

What are the percentages of restenosis with and without stents ? If it's shown to be the same, I'll change my mind (and save $ on the procedure).

I think he'll have that answer on those percentages for us in about three years...and I'm probably one to think the research will go faster than it really will...

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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

I have to say that this doesn't make two of us our dear doctor

Anyway, a question would be if this means that there are other veins which also contribute to CCSVI pathology. Since dr Sclafani is asking from us to wait until he expains why some venograms come out false negative, i take it as this is not the case.

This is a VERY important statement! I am anxious to read Dr Sclafani's info on that matter.

Fan Photo from Italy
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Everybody here brings happiness, somebody by coming,others by leaving.  PPMS since 2000<br />

Dear Dr Sclafani. Thanks again for your commitment. It's been said many times but it really is exceptional. And thanks for passing on our best wishes to Ferrara.

My question - a study was written up and submitted to the Annals of Neurology last month which took place in a number of centres, primarily the University Hospital Charité in Berlin, which found no relationship between MS diagnosis and CCSVI. I'm sure you heard of this study, they published initial results months ago and now here's the paper - http://www3.interscience.wiley.com/jour ... 6/abstract

What are your thoughts on this if you don't mind? They have been rubished on this forum but I know of one of the contributors and he seems like a serious person. I don't think that he would miss an opportunity to help MS patients. Well, in short, I find it very difficult to explain this..




Thanks again!

more details:

Dr Klaus Schmierer quoted in a news article published today-



The full article:
http://www.healthcanal.com/brain-nerves ... -with.html

I am so emotional hearing about Bridget Wehmeyer and the plight of Barb Farrell and remembering people who went before, like Mike from Braintalk, and a cousin of mine who died young, and too many others.

The idea that you would name your study after Bridget brought me to tears again. I am the same age as these women, and I have a young son like Barb Farrell. This could so easily be me. But it could be any of us.

I am emotional to the core that you have chosen to devote yourself to multiple sclerosis and bring hope to us and to our sons and daughters and loved ones, and make a real difference when so many professionals have accepted the status quo and told us, however compassionately, to live and die with our issues.

If the internet connections were veins, everything now would be open and pouring love and gratitude to you and Dr. Zamboni and every professional and volunteer at the heart of this movement and progress, all of whom are making this a reality and bringing us back a chance at living again.

For Bridget, and for Barb, and for every person, named and unnamed, at every level of disability, thank you, thank you, thank you, and let's all send our best energy and prayers for the best news we can get, wherever it takes us.

It is almost 3 pm in NY and no word. Am I to assume (you know what that means?) that the word is not going to be good? I would have thought John (my bf second on the list of Dr. S's for liberation when starting back up) would have gotten a phone call about the IRB findings either way!?!?!? Oh, how I wish we could get some GOOD news today!!!!

He knows how much we're hanging on this...but he's also got two radiology departments to run and who knows what to catch up with...not to mention those anonymous victims of trauma too...I hope it's still good news!


Me too...could it be posture-related? Because the catheter venography is always done lying down and the blood flow relies on different routes if one is lying down or sitting up.

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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,
Can you explain why people who have had treatment sometimes have a return of old symptoms when sick? The people I have talked with about this say it is to a lesser degree. I am included in this group because I have had more headaches and stiffness when I am sick, which resolves when I am well again. But this does seem to cause anxiety. Is there any way you can explain this to ease our minds?
Thank you:)
Rhonda

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Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.

Hi,
Maybe a stupid question, but i will ask...
I got my clavicle broken when i was young. Could it be a cause of a stenosis in the azygos? Does the azygos is near the clavicle?

SORRY FOR THE DELAY. THE IRB WANTS SOME CLARIFICATIONS WHICH I WILL WRITE TONITE AND TOMORROW.

THIS IS AWFUL ISNT IT? SO SORRY TO DRAG THIS OUT

NOTHING BAD HAS HAPPENED. NO COMMITTMENT ONE WAY OR THE OTHER. THEY ARE NOT DRAGGING FEET, NOT INCONSIDERATE. THEY ARE JUST DOING THEIR DUE DILIGENCE

HANG IN THERE.

S

rhonda, such a nice surprise for you to ask a question. And you ask a good one. i am not sure that "illness" brings on old symptoms when sick. perhaps it is the stress? I will look around.

if illness leads to stress???:

Psychosomatic Medicine 64:916-920 (2002)
© 2002 American Psychosomatic Society

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ORIGINAL ARTICLES

Stressful Life Events Precede Exacerbations of Multiple Sclerosis
Kurt D. Ackerman, MD, PhD, Rock Heyman, MD, Bruce S. Rabin, MD, PhD, Barbara P. Anderson, PhD, Patricia R. Houck, MSH, Ellen Frank, PhD and Andrew Baum, PhD
From the Departments of Psychiatry (K.D.A., B.P.A., P.R.H., E.F., A.B.), Neurology (R.H.), Pathology (B.S.R.), and Psychology (A.B.), University of Pittsburgh, Pittsburgh, Pennsylvania.

Address reprint requests to: Kurt D. Ackerman, MD, PhD, Western Psychiatric Institute and Clinic, 3811 O’Hara St., Pittsburgh, PA 15213. Email: ackermankd@msx.upmc.edu

OBJECTIVE: We longitudinally monitored life events and health changes in patients with multiple sclerosis (MS) to determine whether stressful events may trigger exacerbation of MS.

METHODS: Twenty-three women with MS were followed for 1 year. Each subject completed the Psychiatric Epidemiologic Research Interview on a weekly basis. Further information on potentially stressful events was acquired using the Life Events and Difficulties Schedule. Neurologic symptoms were also monitored on a weekly basis throughout the year. Potential MS exacerbations were confirmed by a neurologist who was blind to the presence and timing of stressors.

RESULTS: Eighty-five percent of MS exacerbations were associated with stressful life events in the preceding 6 weeks. Stressful life events occurred an average of 14 days before MS exacerbations, compared with 33 days before a randomly selected control date (p < .0001). Survival analysis confirmed that an increase in frequency of life events was associated with greater likelihood of MS exacerbations (hazard ratio = 13.18, p < .05).

CONCLUSIONS: These results are consistent with the hypothesis that stress is a potential trigger of disease activity in patients with relapsing-remitting MS.