This Is MS Multiple Sclerosis Community: Knowledge & Support

That's the one thing that I think all the time; things that are no longer inflammatory, but rather damaged, will have no way to repair. I fear for that, but there's no way I wouldn't have that surgery if it was found to do good. Marie and Joan are so schooled on this, and I also believe actively pursuing this route, that I plan to lay in the weeds and pounce all over the results of their and others efforts! Nothing that diabolical, but I did take Dr. Z's paper to my neurologist and the next time I went in I know I saw more copies. It's creating a buzz because it is a) a novel approach and b) the first time I've EVER seen anything that could lay claim to "100% of MS'ers have it, and none of the control did". I simply have never found another absolute in the world of MS..........except that it sucks to have.

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They are...Dr. Zamboni is presenting the results of his endovascular surgery to resolve venous insufficiency in MS patients in April at the Charing Cross Vascular Convention. Not complicated at all. (can be outpatient) We'll learn more then

Lew, I actually believe in the theory of plasticity and that axons can be healed. But the cause of damage has to be removed. We have to stop the assault on the CNS first, then the healing can start.
AC

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

I hope you're right momma J! I trust you will be posting links from the convention? I don't know if I'm having any progression or not (my suspicion is no), but my knee has been absolutely in all kinds of pain. I'm going make an appointment with an orthopedic surgeon and, get this, I want to need surgery! Probably the first time you'll hear that, but I'm just scared that my knee pain is like my feet with the tendon tightness and what not pulling things out of whack. Knees are not nearly as "micro complex" as feet, so I'm hoping it's just from all the years of hard pounding. If I didn't have that, I'd feel sooo much better. It has been there for a long time but not at this level. I've had two surgeries on my right knee, but this feels different. I just hope it's an injury and not something I have to get used to.

I can't wait for the news from the convention. I may be latching on too early like I did Tovaxin, but I think it's stuff like that which still allows us to hope. I hope I never lose that ability!

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Also there is a lot of work in the stroke world to see if they can help reduce the damage level with some form of stem cells---but probably not fetal stem cells like those that appparently caused the brain tumors in that young child (fetal cells are already known for tumor issues)-- but more like adult stem cells either from your own marrow or "off the shelf" mesenchymal stem cells give for the express purpose of healing nerves.

The big difference between us and stroke survivors is the chronic ongoing nature of the damage, if it can be stopped, if Z is right, then we suddenly become in a class with stroke survivors.

This Zamboni work is so interesting and hopeful for us. If nothing else, it gives a whole new area for research and inveistgation. Even if it is a "side effect" of autoimmune MS, it can't be good to let it be like that so repair is likely to be standard.

Repair will be something like: they give you an IV then thread a tiny, teeny, vascular catheter in there......they'll advance it to the place where they already decided the valve problem (or plaque or whatever it is) is located.....they'll do one of several things but one of them would be to blow up a balloon there to open up the vein so blood can flow through there unimpeded.........they'll take out the catheter, add a bandaid with superman on it, and be done.

You'll go back in a month and get new dopplers to see if the reflux is gone.

I made that whole thing up as if I had inside knowledge of what the Liberation procedure is exactly, and I don't, but that is what endovascular "surgery" is usually like; not too scary and very minimally invasive, though there are side effects (you could get a clot for example).

But look how new this is! Gee, there can be other things out there too. It is hopeful!

Lew said

Ditto! Let's keep hoping My dopplers are Mar 13-pounce away

I'm all in too, and it is early, (really, someone needs to replicate)but unless one of the 8 researchers at Zamboni's clinic is totally cheating and unblinding, and has done that on all 750 or so people that have gone through, with an evil intent of producing false results, the concordance means there is at least SOMETHING there that people can work on---at the minimum to have something new to research more

I find the "unblinded" scenario in a large research team unlikely considering no one wants their work to end up being a laughing stock....
Their good name as far as results go is all they, and their University, have. They live for that, thus they really attempt to be honest Abe.

That the Z results are completely incorrect is really unlikely to me. That it could be a side effect of autoimmune MS is possible, but it would still be something to treat and improve outcomes. For a lot of reasons I think that is unlikely too, but that's another thread.......

Hope is good and always welcome.

I don't blame you a bit, but research will go where it is going without us "being on board" luckily! It doesn't require any of US to "get it".

Ok, from what I understand you can have two people with identical MRI and one can be EDSS 3 and the other EDSS 7. Seems to me that any explanation or speculation needs to take that into account.

My speculation is that it's like a battlefield. After the battle the field contains lots of remnants and historical artifacts that will tell a story. Decades, centuries later someone will dig stuff up and make judgments about what they found and what those things mean. But, it's all speculation. The story is still good, but it's exactness is questionable.

Now lets look at two battlefields, same size, and maybe similar artifacts, but when the history is written, little is gleaned from what the battlefield itself says - folks want to know about the personal stories tht were told.

MRI tells a part of the story, but not one we can rely on for a full understanding of what is happening. How was that? Been to Gettysburg? Ken

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My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

Wow, this is some deep discussion.

I hope and pray that this Dr Zamboni is on the right track. I will be standing in line for this treatment. Sign me up today.

While I wait I will keep taking my rebif injections And take my supplements and move when ever I can.

CF

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Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.

'course I have! I was going to include a picture of my Civil War Library but I'm too lazy right now to put it all in one place.

You threw me off by going at the mri situation from the opposite direction that I'm used to, but that just made it more interesting...thanks!

This is not the time or place to go into detail but I agree with your outlook and I think you and I agree that the effects of plasticity play a huge part in this situation which seems so nonsensical, although to prove or explain it at this time would be impossible.

Even though I had to twist your arm a little, the opinion is appreciated!
Bob

Guys, you are terrific! I feel better only by reading your posts. Thank you.

And you are soo knowledgeable about evth related to ms..well, I also read stuff, but obviously am way behind.

I believe that in the first place finding drugs for neuroprotection is very important and feasible and the sooner a suitable neuroprotector is found the better, as you are aware that disability is caused not by the loss of myelin but by the degeneration of axons. And it is proven that even while on CRAB desease progresses, hence degeneration.

Well, when i say 'cure' I have in mind be 'able' to perform your regular activities, i.e. have a normal life. And I don't mean just slowing the progression, because it will be slowed for let's say 10 years (if lucky) and then all of a suden OOPS... but a permanent halt, taking medicines or not. Because for me one of the major problems is that you never know! Today you may be fine, but tomorrow...

In this respect I don't agree with what was said that after 3 relapse-free years under treatment you're considered 'cured'. That is what treatment is for - secure as long relapse-free period as possible, which doesn't mean you won't have 4 relapses in the 4th year.

Of course, I pray for a real 'cure' which i agree will be found when the cause is found..which alas, is still a mystery. Referring Zamboni..I have read to an extent most of what you have here, but I am not that optimistic (perhaps I haven't grasped it thouroughly), because it seems too plain somehow - the reason for ms being still unknown...why is this reflux happening, etc.

At the same time suppressing/modifying the immune system for a lifetime also doesn't sound ecouragingly final...
Stem cells, well, perhaps to reverse some damage..ot reboot you as trials have been done. Which again hasn't tackled the cause prblem...

I become confused when I read through all possible future treatments,and at the same time hopeful.

My memory just got jogged. When I was first being diagnosed there was an opthamologist that was absolutely convinced that what was happening was "Exercise Induced Ocular Ischemia" since my ON presented as Uthoff's and was very hard to find as I had to be in an 'exerted state' for it to be there. Now, please forgive me if I look like a dumb ass here, isn't ischemia some form of vaso constriction? The reason I ask is that I've heard of straining being implicated as something we don't want to do surrounding this. Well what did I do after my dx? I cranked up my level of "straining" by exercising even harder than I was for about the next 5 years. I'm not sure if this has any relevance at all. For quite some time my MS didn't even show up unless I got to the point where I was 'strained'. I don't know what anyone would do with this story, I'm just telling it since it seems eerily coincidental; unless of course I'm talking about arteries of something .

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I keep thinking of a remark the phlebotomist made to me when I was having the massive 15 tube blood draw before the Revimmune. He said, "You're next, Pilgrim." Most of the people getting blood draws were cancer patients. But, I think we are all on the Pilgrimage together. We are trying different routes to get to the same place. Anyway, I am glad you guys are pursing the vascular insufficiency end of this. I am completely on the fence as to whether it is a cause or result of the MS, but I am very excited to see what comes of your endeavors.

Sandy