WeWillBeatMS in Brooklyn for Liberation 6/11/11

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

WeWillBeatMS in Brooklyn for Liberation 6/11/11

Postby WeWillBeatMS » Fri Jun 10, 2011 10:17 pm

I tested positive for CCSVI at the AAC office in Staten Island this morning. My veins are restricted! Wahoo! :)

I'm writing this from the hotel le bleu in Brooklyn and it's just after 1am and I'm about 10 hours away from turning Dr Sclafani loose on my CCSVI and so I need to get to sleep real soon but I just wanted to put this up tonight as my Liberation journey finally gets started.

Today my wife and I look lots of great pictures of the Statue of Liberty as we crossed over from Manhattan to Staten Island on the Ferry and tomorrow I get my Liberty.


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Postby Johnson » Sat Jun 11, 2011 1:29 am

I would say "Best of Luck", but you won't need that with Dr.Sclafani. He is an artist, and a Prince amongst men. Indeed, we are so lucky to have him, in my opinion.

Shucks... Best of Luck!
My name is not really Johnson. MSed up since 1993
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Postby Cece » Sat Jun 11, 2011 2:58 pm

today was your day! Hope all went very well and you are recovering and improving even as we speak. :)
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Postby bestadmom » Sat Jun 11, 2011 3:54 pm

You couldn't be in better hands. I can't wait for an update when you are rested, hydrated, and feeling good.
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Postby cathyb » Sat Jun 11, 2011 7:24 pm

My thoughts are with you, and I am sending you good thoughts and positive energy.
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ccsvi

Postby blossom » Sat Jun 11, 2011 8:03 pm

the very best thoughts to you and success with positive changes for the better.
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Postby KikiT » Sun Jun 12, 2011 10:05 am

Dr. Sclafani let loose on my veins Monday before you in record time.
You will fell like you got hit by a truck and then smooth sailing. I even went to a wedding last night. Seems I have 1 week .
I hope all went well for you. I have noticed subtle benefits and today is day6 post liberation . Sending good vibes to newest Dr S Club Member.
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Postby Nunzio » Sun Jun 12, 2011 2:37 pm

My best wishes to you.
Hope after the treatment you will change your name to WeHaveBeatenMS.
Everybody here brings happiness, somebody by coming,others by leaving.  PPMS since 2000<br />
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Postby Cece » Sun Jun 12, 2011 4:16 pm

Kikit, your DrS Club Member badge is very fresh as well! Congrats.

If WeWillBeatMS does not return for a week until an update, I will cry. :)
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Postby CD » Mon Jun 13, 2011 11:10 pm

Praying for tons of improvements for WeWillBeatMS and KikiT.

Good luck to both of you. :D
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Postby cathyb » Wed Jun 15, 2011 5:40 pm

Any word? I am so curious, and SO so so hoping for the best!
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Postby EJC » Thu Jun 16, 2011 9:32 am

5 days and no update, this is like some form of twisted forum torture....

Hope it all went well.
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CCSVI? MS? Lyme disease?

Postby WeWillBeatMS » Fri Jun 17, 2011 10:25 am

I really apologize for the delay in giving everyone an update but I am actually still trying to figure out what happened. And I'm serious.

Here's the deal: My wife and I are born again Christians and we (like many of you I bet) regularly pray for God to do a miraculous healing. Well, prior to the ultrasound in Staten Island on 6/10/11 and the angio in Brooklyn with Dr Sclafani on 6/11/11, my family and friends from Michigan were praying for us, her family and friends were praying from out of the country for us, as well as our friends and family in Florida where we live.

Last Friday I was tested for CCSVI and tested positive with at least two veins showing reflux. Then on Saturday Dr Sclafani said he could not find CCSVI in my veins and even said that he hasn't seen such healthy veins in the last two years. He also said that he has never treated someone diagnosed with MS that DID NOT show CCSVI on the venogram/IVUS and that I was the first. So as I'm still on the table and he's telling me this, I'm sorry to say but my first reaction was "Oh Great, so now what do I do?" I say that I'm sorry because me being a man of little faith way too often I never even really thought of the possibility of a miracle. My wife had told me for weeks prior that she was asking that Jesus would be the one actually doing the surgery and not Dr S. To be honest, feeling the way I feel has taken my faith down to an all time low. So after the procedure Dr S asked if I have ever been tested for Lyme disease and I told him I don't think so. He's never seen someone with MS that didn't also have CCSVI. So was it a miracle? or do I have Lyme disease? or do I actually have MS without CCSVI? I do feel better but I still have a lot of symptoms still. Saturday night was actually quite rough, I vomitted late Saturday night and even did during the procedure, I guess from the anesthesia which I hate. But the three days following the procedure my wife could barely keep up with me cause I felt so good as we went all over NYC from early morning until at least 9pm sometimes later.

I have called all three of the neurologists that I saw back in 2005 who independently diagnosed me w/ MS and none of them checked for Lyme disease! What? If MS is a disease that can only really be diagnosed after checking for everything else, how is it that neuros aren't doing that? So I am trying to find a good infectious disease doctor to test for and if need be treat Lyme disease, if anyone has any suggestions I would appreciate it. I want the best, I don't care where they are, I've got a beautiful loving wife and two young kids who need me and I refuse to not get better, whatever this stupid thing is I have.

So that is where I am at and again sorry for the delay.

The fight goes on! :wink:

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Postby Cece » Fri Jun 17, 2011 1:46 pm

Wow!
There is a lab out in California that does Lyme testing. You don't have to go to CA to get it done, the samples get mailed in.

I wouldn't have known how to take that!! Is it good news or bad news?

There are other differential diagnoses besides Lyme, too, just to broaden the possibilities.

It's a beautiful thing to have that many people praying for you.
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Postby cheerleader » Fri Jun 17, 2011 2:04 pm

Hi We Will--
We did the Lyme route in the beginning with a local Lyme literate doctor and testing of blood at Igenex. Jeff was negative. You can go to a local doctor who will send your blood to the lab. Here's some links for info:
http://www.lymenet.org/
http://www.lymediseaseresource.com/Doctor.html
Lida Mattman, Ph.D. Nelson Medical Research Institute 11664 Martin Rd. Warren, MI 48093 Tel: 810-755-6430 Fax: 810-755-4511

What is puzzling about your case is that you showed reflux prior to the angio, then, once on the table...nothing. Hmmmmm. Positional reflux? Only when upright maybe? Something with the vertebrals? What was the position you were in when reflux was noted?

In any event, I am sorry for the nausea and all that went with the procedure, and then to have no answers...I know your faith is helping you deal with all of the stresses. It's been the cornerstone of Jeff and my journey since the beginning. THoughts and prayers to you and your family as you continue searching,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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