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Hi from Jeff, re. my stent treatment at Stanford

Hi everybody! This is Jeff (aka 'Cheerleaders husband'). Yes, I'm actually NOT a fiction of my wonderful wife, but a real person. I'm happy to share with you my experience at Stanford for whatever help and information it might bring to light. Those of you familiar with this thread probably already know about the work Dr. Zamboni has been exploring with our disease and this completely new model of a possible cause, and treatment for ...

another one for Stanford, and a question

Hi All -

I've got an appointment with Dr. Dake starting July 14th. As so many have said, he and Angela could not be nicer. I will eagerly read about those who go first, and will happily post during my time there.

Now that I have booked it, I started wondering about the implications for my using Copaxone. I will need to discuss it all with my neuro, but I am wondering if anyone who ...

vasoconstrictors, vasodilators

(I started a discussion about this in the Remission thread, but thought it probably warrants its own thread.)

Assuming there is some truth to the CCSVI paradigm, our brains and spinal cords are damaged when veins narrow down enough to create backflow/pressure.

While much of the stenoses (narrowing/blockages) are likely to be present from birth, it does seem likely that various things can make the problem worse and bring on relapses.

I don't expect to ...
Read more : vasoconstrictors, vasodilators | Views : 9267 | Replies : 12 | Forum : Chronic Cerebrospinal Venous Insufficiency (CCSVI)

Clinical trials 2009

Poor Dignan is living in some God foresaken part of Canada in a town with no attractive women and still under 12 foot of snow. To make things worse our football (soccer) team (Arsenal) had a bad end to the season so he's a bit depressed. To stop him spending all his time down the local bar / pole dancing club, I've found him something to keep him busy. ... ...
Read more : Clinical trials 2009 | Views : 2400 | Replies : 4 | Forum : Drug Pipeline

My Campath Story

WOW, what an interesting but very stressful journey to finally get to this point! The short version of the story is that I was a Tovaxin lab rat who received Tovaxin during the 1 year of the Phase IIb trial and then 4 out of 5 vaccinations in the extension phase before Opexa ran out of money and shut the study down. At that point it seemed like the obvious thing to do was enter ...
Read more : My Campath Story | Views : 3532 | Replies : 11 | Forum : Campath (Lemtrada, Alemtuzumab)

Trying to Get Referral for NYC

I just spoke with Angela from Dr. Dake's office, regarding any possible referral he might be able to give me for a doctor to reach out to in New York City. She said she knows that Dr. Dake does have contacts with people here in the Big Apple, and that he'll get back to me sometime either later today or tomorrow. She was extremely gracious and helpful...

As I've said before, I'm not completely convinced ...
Read more : Trying to Get Referral for NYC | Views : 3856 | Replies : 21 | Forum : Chronic Cerebrospinal Venous Insufficiency (CCSVI)

CCSVI- Glossary

Here are some common terms in the CCSVI handbook. Please PM me if there are additional terms you think we should add, or better definitions, and I'll update-

agenesis a type of narrowing (stenosis) of the vein seen by Dr. Zamboni - Absence, failure of formation, or imperfect development of any part.

annulus a type of narrowing (stenosis) of the vein seen by Dr. Zamboni- A ring, a circular or ring shaped structure, as ...
Read more : CCSVI- Glossary | Views : 23654 | Replies : 15 | Forum : Chronic Cerebrospinal Venous Insufficiency (CCSVI)

love this topic!!!!

May 18, 2009

Detecting Nervous System Repair in MS: International Workshop Findings Published

What if a new therapy was developed to protect brain cells from damage and even regenerate new cells to repair damage caused by MS, but there was no way to prove that it works? The question of how to detect nervous system protection and repair in people with MS – without having to wait possibly years to observe a person’s disease progression ...
Read more : love this topic!!!! | Views : 1336 | Replies : 0 | Forum : General Discussion

CCSVI skeptics

I was curious to see what my neurologist would say about all this - here is his response to my asking for any leads for an MRV scan:

I am afraid I cannot support this. I have read the material and find it totally implausible. Doing MRV is not a problem but there are significant costs assoicated with it and absolutely no persuasive evidence that is would be beneficial. There are significant risks associated with ...
Read more : CCSVI skeptics | Views : 23220 | Replies : 202 | Forum : Chronic Cerebrospinal Venous Insufficiency (CCSVI)

a glossary?

I am way behind in reading this thread/forum. Could someone do a sticky glossary at the top: stent, stenosis, that kind of stuff...? Please.
Read more : a glossary? | Views : 1846 | Replies : 4 | Forum : Chronic Cerebrospinal Venous Insufficiency (CCSVI)


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