This Is MS Multiple Sclerosis Community: Knowledge & Support

After re-listening to the NMSS/AAN forum on CCSVI I couldn't help myself and I wrote the following to Dr. Robert Lizak who was the first person to make a comment at the end of the forum.

----------------------------------------------------------------------------------------------

Dear Dr. Lizak,

Thank you for making your comment about pathology in the CCSVI forum yesterday. No doubt your concerns are echoed by a great number of your colleagues, my own neurologist included. My question to you is this: In your long career in neurology, when has your superior pathology ever made an MS patient better? I’m not talking about temporary relief by pumping steroids into your patients. I’m not talking about drugs that slow the inevitable slide into MS oblivion, I am talking about BETTER.

Dr. Zamboni has delivered just that. You may not like his pathology. You may not even like him, but you cannot deny his results. It reminds me of some verses from the Gospel of John (modified slightly):

“Since the beginning of time it has never been heard that anyone [made an MS patient better]. If this man were not from God, He could do nothing."
– John 9:32-33 (NASB)

Neurologists have thrown decades and billions at MS with very little to show for it. Maybe it is time to try something else.

Being able to capably answer the tough questions is how theories become stronger and gain confidence.

I like the tough questions because if the doctors can answer those, I grow more and more comfortable with this line of inquiry and its merit.

...only problem is, as Lizak stated, "not a question, just a comment." Lizak wasn't seeking to broaden his or anyone else's understanding of MS or CCSVI, he was merely throwing mud. That's what ticked me off.

Although I agree with your sentiment, I don't believe this is a fair statement. not a fan of the DMDs, but they have made life way better for thousands of MS patients, and have slowed disease progression for many so that now that may have a chance at getting to the root of the problem should CCSVI pan out to be the cure we all hope it will be. Again, trust me I hate the DMDs, as does my wife who has had very bad reactions to them, but to say there is little to show for the money spent trivializes the benefit they have given MS patients over the last couple of decades.

Johnnymac
You are all a gracious lot. I guess my expectations are too high? I've only had MS since 2005 so I haven't had a chance to develop the patience that some of you have. Hopefully, I won't have that chance.

I hope so too! Your anger is not misplaced, let it fuel you to keep pushing forward, these are exciting times in MS for sure.

comment/response, question/answer. Whatever brings out greater clarity is all good to me. So long as it isn't a personal attack and it's on topic, I'm glad for the reassurance that I have when the doctors have an informed response and a refutation. It's not the question/comment so much as the response that I care about. The emotional vitriole and accusations are ony distractions and don't bring anything to the table on either side, and sweeping generalizations don't help to add to the real focus. I wish everyone would keep the conversation more on topic and focused on learning about CCSVI.

Flashhack,
It's a free world, you can make your comments...God knows everybody else does.
PS The longer you have MS, definitely does not increase your patience.

damn. I'm in big trouble.

Hey Flash-
your heart is in the right place. Nice job expressing your thoughts. Just so you know, it's Dr. Lisak--and he's very well-respected. Has spent his whole career in immunology and microbiology of inflammatory and immune mediated diseases. Lots of publications, awards, etc.

http://neurology.med.wayne.edu/departme ... hp?id=1200

He is enraged to see a vascular doctor coming forward with an upside down view of MS causation. Simply livid. It's cognitive dissonance, and it's not going to go away. He does not believe that MS is anything like chronic venous disease in the legs, and he thinks all of the iron deposition and demyelination is autoimmune. He thinks Zamboni's pathology is way off base.

Dr. Zamboni looks at the fibrin cuffs (a sign of venous hypertension) and the iron deposition in ring-like lesions near the veins, and sees venous insufficiency. Dr. Zamboni made a good point...in citing the Prineas and Barnett research which showed no immune activity in fresh lesions--how can Dr. Lisak continue to stick to the auto-immune credo?

This is going to be a real uphill battle with neurologists, and it's easy to see why.

The main point is, it's research and theory for the doctors, and it's real life and death for the patients. And you expressed that well, flash-
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

you never seize to amaze me with your knowledge cheer...... ; )

_________________
STAY REAL MY FRIENDS

dx 1989, spms

.

Come on Bob. You have to admit the general response from the neurological community has been pretty bizarre. When I brought up CCSVI with my neuro last summer I was surprised to be treated with such hostility. (Seriously, one of the nurses was yelling at me in the infusion suite.)
I had not realized how a development like this could affect his livelyhood. Once I took this into perspective, it made more sense.
In a twisted way, their response has almost been comical. Maybe in a few years from now, looking back, it will more humorous. Right now it's just sad and it sucks.

Heather

PS. Bob, just for the record I am a closet fan of yours. Granted your no Joan, or Marie, but I enjoy your wit and insight just the same.

okay Bob...

I've been lurking a long time and have much enjoyed your input/humour/insight etc...

Your post begs the question...if Cheer is so off-base, just what is "the" defintion of cognitive dissonance?

Inquiring Minds Want to Know

Hope

_________________
-----------
Dx March 2003
Avonex

.