DrSclafani answers some questions

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

Postby Cece » Fri May 28, 2010 5:57 am

drsclafani wrote:
Cece wrote:
drsclafani wrote:i wanted a night off, but someone sent me a private message and i was searching for his/her reference. I have been doing this almost every night for almost 2 1/2 months. A labor of love, but i needed some time away.....but how can i ignore some of the questions


What you are doing here is unusual (no other doctors here) and valued.

(edited out: presumptious advice on setting boundaries!) :)


thanks mom


:oops:

drsclafani wrote:So better living through chemistry...with thanks to Big Pharma :lol:


ohhh, the irony...this was a good one!! :D
"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
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Postby Donnchadh » Fri May 28, 2010 6:24 am

drsclafani wrote:
IRBs are very intersting organizations. They have to do a lot of work for which they do not get paid. They read a lot of nonsense. They have to wade through poorly written, inadequately thought out projects to guarantee that patients are not put in harms way, for projects that dont have value, or arent well thought out while assuring the patient confidentiality is not jeopardized.

So we have to to give them slack.

now to the skinny:

My proposal has been reviewed externally by a variety of people to "pre-position it" toward a favorable decision by the IRB. However there are no guarantees that the IRB will accept it, like it, want wholesale changes or minimal modifications.

The IRB has formal discussion and decision on the project on June 9.

they have several options

1. accept protocol as written. Liberations can begin. Yeah!!! :lol:
2. Accept provisionally with specific wording changes. Liberations resume Yeah!!! :D
3. Request detailed changes. This would require revision of the application. The revision would be reviewed at the next meeting of the Group reviewing my application. Each group meets once monthly :evil:
4. outright rejection (i do not think this is a possiblity.


Interesting details; I was wondering what a IRB entailed. I can only hope that my IR's proposal is accepted.

Donnchadh
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Postby Cece » Fri May 28, 2010 6:28 am

It doesn't look like stents are much of an issue either, for blood donation:

"Angioplasty (with or without stents) – Heart Attack – wait 6 months"
http://www.bloodcenter.org/donate-blood/donating-blood/donor-eligibility.aspx
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blood donation

Postby silverbirch » Fri May 28, 2010 6:50 am

quote="Donnchadh"]Dr. Sclafani:

The reason I am asking is that donating whole blood has been the best method for me in dealing with the MS effects of iron deposition.

Donnchadh[/quote]

I was a blood donor up untill my attack 2009 and to follow a DX MS
Im not on any DMD nor ever had steriods -

What is the benefit of donateing blood for ms if you could explain in simple terms as Im cogg fogging it to day

silverbirch
Last edited by silverbirch on Fri May 28, 2010 7:44 am, edited 2 times in total.
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Postby Donnchadh » Fri May 28, 2010 7:03 am

silverbirch wrote:
Donnchadh wrote:Dr. Sclafani:

The reason I am asking is that donating whole blood has been the best method for me in dealing with the MS effects of iron deposition.

Donnchadh


I was a blood donor up untill my attack 2009 and to follow a DX MS
Im not on any DMD nor ever had steriods -

What is the benefit of donateing blood for ms if you could explain in simple terms as Im cogg fogging it to day

silverbirch


I can only speak for myself personally, but with over twenty years of dealing with progressive MS I had tried a number of things. Some seemed to help; others had no effect either way. Vitamin E, for example, had no effect. I hesitate to list what is effective as I am not a doctor and what helped me might harm you.

This was long before I had ever heard of CCSVI.

Donating a pint of whole blood on an eight week schedule seemed to help with chronic fatigue. I felt better, with less "cog fog."

I was never on any MS parma drugs as the neuro's said there was nothing they could do with my case. Which, in retrospect, was a blessing considering their side effects.

Donnchadh
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Postby Cece » Fri May 28, 2010 7:37 am

silverbirch wrote:What is the benefit of donateing blood for ms if you could explain in simple terms as Im cogg fogging it to day

The theory is that when you donate blood, your body has to make new blood to replace it, and then when your body is making new blood, it draws iron out of places where it's in storage...and as MSers, we have iron stored in our brains.

I don't do blood donation, alas, but I do take green tea supplements with the same goal in mind...there is some good research to back that up, that it can cross the BBB and bind to iron and pull it out.
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A question from Spain

Postby jfgonmen » Fri May 28, 2010 8:09 am

Dear Dr. Sclafani.

First of all, I want to apologize because my english is not good enough but I'll try to do my best to make myself understood.

My wife has MS for 20 years ago. She is 37 right now. She has SP MS two years ago and she is rapidly decline and worsering.

She was made some test to see if she has CCSVI ( Eco-doppler, flebography and scan ). We was told that she had asimmetrical yugulars. The left yugular has 12 milimiter and the rigth has 5.5 milimiter.
The doctor was surprise because it happen along the both yugular since top or beggining in cranial hole till the end of the neck. Even with the yugular cranial holes happens the same, the right cranial hole has a size that is less than a half than left one size.

My questions are:

Has it something to do with CCSVI?
Would it have any influency in MS?
Could it be treated some way?

Dr., thank you very much for your attention.

Best regards
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Postby Donnchadh » Fri May 28, 2010 8:10 am

Cece wrote: snip

I don't do blood donation, alas, but I do take green tea supplements with the same goal in mind...there is some good research to back that up, that it can cross the BBB and bind to iron and pull it out.


Green tea is also one of the things I take; basically acts a chealating agent against iron.

Also helps control appetite swings.

Donnchadh
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Re: A question from Spain

Postby Cece » Fri May 28, 2010 8:21 am

jfgonmen wrote:My wife has MS for 20 years ago. She is 37 right now. She has SP MS two years ago and she is rapidly decline and worsering.

She was made some test to see if she has CCSVI ( Eco-doppler, flebography and scan ). We was told that she had asimmetrical yugulars. The left yugular has 12 milimiter and the rigth has 5.5 milimiter.

And just like that, not twelve hours after the good doctor was here, he has two poignant questions waiting for him once again, between this and jr5646's.

How does that story go, about saving starfish off the beach? "It sure does make a difference to that starfish."
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Postby L » Fri May 28, 2010 9:52 am

Donnchadh wrote:Green tea is also one of the things I take; basically acts a chealating agent against iron.


In my experience Milk Thjistle (which does not cross the blood brain barrier) and iP6 (which does) are much more effective.

You see, taking them cleared up the mystery as to why I was getting palpitations. For ten years I didn't know that I'm mildly anaemic, or I have trouble retaining iron or using iron or something. And, in my case, it brings on palpitations.

I discovered that through taking stuff to chelate iron. Milk Thistle brought on palpitations within half an hour (really major hand-of-death-on-shoulder ones), iP6 within six hours. Green Tea never did any harm and I'd been drinking it daily for months.

Now I can drink alcohol (in moderation alcohol also chelates Iron) drink coffee (does the same) and do whatever I like because, now that I regularly eat iron rich foods, I never, ever get palpitations (I am a vegetarian, practically a vegan you see. Not much iron). If I go without an iron rich food+vitamin C (aids the body in absorption of iron) for a few days then I am prone to palpitation s if I drink coffee or booze. Well, well, well. That's what I thought to myself after my self-diagnosis. Well, well, well, what a lot of trouble over nothing.

But, from my experience, I reckon that Milk Thistle is really effective, iP6 very effective and Green Tea not so effective at all. But I'm not knocking Green Tea. N o way, it's a fine drink.

Sorry for filling up this thread with my ramblings but I just couldn't hold back.
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WHY is this soo confusing

Postby SisterMS » Fri May 28, 2010 10:44 am

My sister has a tentative 2011 CCSVI appointment in Poland. Where else is this being offered?
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Re: WHY is this soo confusing

Postby Cece » Fri May 28, 2010 10:52 am

SisterMS wrote:My sister has a tentative 2011 CCSVI appointment in Poland. Where else is this being offered?


Do a search on Dr. Siskin or go look for the thread about "treatment available in the US now!" ... he has a list, I fear it grows longer by the day ... at the same time send an email to ccsviliberation@gmail.com (did I get that right?) to get on Dr. Sclafani's list, contact person is Holly Barr, she is wonderful ... both these Dr. S's are in New York, Albany and Brooklyn ... after that, write letters to every interventional radiologist near you & present the information on CCSVI & see if it intrigues anyone...it takes leg work, but people are getting through, the tracking sticky thread grows by the day. :)
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neurologist support

Postby msgator » Fri May 28, 2010 11:00 am

Hi Dr. Sclafani,

I am on your list and went to my neurologist today. He is very supportive of my having the procedure as long as I stay on the copaxone in the mean time. He has a lot of respect for the people in Buffalo and is pleased that there are opportunities closer to home (I am in CT) to have things checked out.

So my question is....what do you need from him as far as medical records/ reports???? He would like copies of reports, if possible, on all the tests/procedure you will do. He doesn't care to see the images, because he doesn't think he would be able to read/understand them.

I thought he would have that response, but after everything I have read I did get nervous.

Thanks again for everything you are doing. I am a faithful reader, if not contributor.

Ann
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Veins opened 10/15/10. RIJV still on the small side. Feeling much better.
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Postby MS_mama » Fri May 28, 2010 11:00 am

thank you for your reply on the anticoagulants Dr. S. You mentioned long-term effects of coumadin--does it still cause side effects even after it is discontinued? Are the injections you mentioned heparin? This is what Dr. Z mentioned in his Charing Cross paper so I was curious as to how others' protocols are.

If that is not part of the protocol at Dr. Siskin's practice and I request it, would it be adequate to follow up with a GP as regards the anticoagulants or with an IR/Vascular specialist?
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
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Re: neurologist support

Postby Cece » Fri May 28, 2010 11:24 am

msgator wrote:So my question is....what do you need from him as far as medical records/ reports????

I checked Holly's email from a few months back and she had asked for all DVD's of past MRIs and "relevant medical records", mailed to:

Kings County Hospital Center
S Bldg Radiology
Suite S2N50
451 Clarkson Avenue
Brooklyn, NY 11203

Personally, I mailed them everything. :)
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