JCB's Liberation Journey PPMS

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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JCB
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JCB's Liberation Journey PPMS

Post by JCB » Tue Sep 21, 2010 9:09 am

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SandyK
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Post by SandyK » Tue Sep 21, 2010 9:55 am

This is great news Jim. Wishing you all the best health!
Diagnosed 1994, Self EDSS is 6.5

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JCB
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Post by JCB » Tue Sep 21, 2010 11:29 am

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Post by Rokkit » Tue Sep 21, 2010 11:42 am

Ok, JCB, your stenosis pattern is not what Zamboni predicts as the average case for PPMS. And there are lot like you (e.g. me if my self-diagnosis of PPMS is correct). In fact, your CCSVI and mine look just like most of the RRMSers. I am truly stumped by this. Why does the same stenosis pattern manifest as RRMS in some and PPMS in others? Did your doctors by any wild chance happen to address that?

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JCB
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Post by JCB » Tue Sep 21, 2010 11:50 am

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Trish317
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Post by Trish317 » Tue Sep 21, 2010 3:23 pm

I'm so glad that you're seeing some positive results, Jim. Sending good thoughts for continued healing and a future of good health.

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ccsvi

Post by blossom » Tue Sep 21, 2010 5:08 pm

glad to hear you are well and so hope we will be hearing of more improvements.

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Ned
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Right foot numb

Post by Ned » Tue Sep 21, 2010 6:59 pm

JCB
I to have had great results from angioplasty - but have still got an un-cooperative right leg/foot and right hand.
My azygous was also "clear", but have been reading so much info about the implications of the azygous, particularly with legs and hands.

Google - First Regional Workshop "CCSVI and Multiple Sclerosis" - April
24, 2010
Speakers are Prof Zamboni, Roberto Galeotti (Zamboni's IR)
Fabrizio Salvi

Also - Nunzio post Fri Sept 17 10.22pm Subject "other veins involved in
CCSVI"

I am booking for a 2nd procedure, to focus on the veins that are restricted, thus diverting their blood flow through the azygous, and overloading it.

Also read - MS patients share "liberation" stories (Star Phoenix)
Some success with right side, leg,foot,hand after azygous
treatment (or veins diverting into azygous??)

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Ned
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Right foot numb

Post by Ned » Tue Sep 21, 2010 7:01 pm

JCB

The Nunzio post is in the "This is MS" CCSVI forum

Ned

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JCB
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Post by JCB » Tue Sep 21, 2010 8:00 pm

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Post by Rokkit » Wed Sep 22, 2010 6:49 am

JCB wrote:So come on science, come on research, catch up to my expectations.
+1

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Trish317
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Post by Trish317 » Wed Sep 22, 2010 7:15 am

JCB wrote:Ned,

I too think that there are other veins that are restricted, yet undiscovered. I believe we will look at CCSVI a whole lot differently in the future as the good Dr.'s learn more.

I will be greatful if this just slows the progression while they get to that book learnin stuff. I will be greatful if the progresion just stops. I knew going in that my chances were slim with PPMS but everything just kind of fell in place for me to be treated. I want to be in control of this but know ultimately it's not me, kind of humbling.

My small improvements are encouraging, and I am planning on slowly building my excersize routine. Hard not to over do the excersize, not my nature. My wife knows this fortunately and is constantly reminding me to take it slow. I want it all back and I want it now. I want to sign up for that next triathlon (tough when you can't swim or run with just one side working). It's great to be spectator, but I'm selfish by nature. I would like to play tennis with my kids rather than coach at court side. Again a humbling experience. I would love the opportunity for my Senior High son to have the chance to beat the old man.

So come on science, come on research, catch up to my expectations.
My prayer is that my darling man's hopes remain while research and science catch up. The other day he said "the future is bright".

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JCB
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Post by JCB » Wed Sep 22, 2010 8:01 am

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Post by Fernie12 » Wed Sep 22, 2010 1:43 pm

I too am PPMS. Went to Albany early August and am happy to still report improvements.

RE: Veins - I had the same jugular occlusions and nothing in the azygous. Who would've thunk it?

Great to hear, JCB! Keep it up!

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Post by JCB » Thu Sep 23, 2010 6:40 am

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