This Is MS Multiple Sclerosis Community: Knowledge & Support

In theory, MS is autoimmune. So, why a neurologist and not an immunologist or haematologist?

For instance, I break my arm and it hurts. I need something more than an anaesthesiologist, who only manages the symptom of pain. I have to somehow fix my broken arm, or else the pain will never stop.

Neurologists are not MS specialists. They can make the diagnosis, but they have no idea about what caused the damage. Even if it is the immune system, they only have a basic knowledge of it. Would you let a dentist put your broken arm in a splint? If not, why do we let a neurologist modify our immune systems?

sou

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Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

Sou this point is brillaint. Indeed why are we not seen by immunologists?
We'd then have assays of our immune systems and some form of practical basis for monitoring the disease, rather than monitoring the damage.

On the other hand I am very strongly in the belief MS is degenerative not autoimmune so it is a moot point to me whether or not I see an immunologist.... My bias is that my immune system is working just fine thank you very much, now let's get on with what IS ailing me.......

I hope Zamboni's has uncovered the key to finally unlocking this disease.

ANd here's one for the "why did they not see this before" crowd



Huh. Imgaine that. Disteded retinal veins..... This is a paper from the '80's.

All I can think is that it takes the background and expertise of a vascular specialist to see this for what it is: an important sign that should have been noted and thoroughly investigated for its implications long ago.

Why has the neurology community looked at these for so long and considered them a mere peculiarity of MS vascularity rather than a fruitful area for research? I guess the problem is really a lack of good tools until now for doing good investigation in vivo. Looking at an autopsy sample where there is no living blood flowing it is not as obvious as it is when you have things like 7 tesla MRI and doppler to assess it in a living person.

Marie,

I'm so glad you are here. I take great pains to read your posts because you seem to grasp it all so well and 'dumb it down' so people like me can understand it! Thank you. . I'm excited about this! Maybe falsely so (read: Tovaxin), but it's the hope that keeps us going sometimes I believe.

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

I agree, this is a great point. I think at a pure research level at some of the hospitals and universities, immunologists are involved in trying to determine a cause for MS.

But after I was diagnosed, I went to one of the top (by reputation) MS centers near me. I was ready to donate blood, spinal fluid, whatever I could to help the cause. I was pretty disappointed that their wasn't any interest in this. How can they study the disease without anything to study?

px said me too. IT is very surprising to me once I was told it was autoimmune that we weren't doing any assays to see what was what.

Lew said
Thanks It's just my opinion, I'm a patient too, but thanks for the compliment.

but I have to say I am gung ho about this and may be on too soon too. It is not been replicated by anyone else yet, that's a problem.

I do NOT believe that the reason for that is that Zamboni is wrong, the trouble is I don;t think this has caught the imagination of the VASCULAR docs yet. IMHO it will take interest by THEM to see this through because they are the ones who can do the work. All those specialties take several years post med to learn them, a neuro does not know what a vascular guy does.

Where it seems a no brainer to a vascular guy "Hey this is like a venous ulcer" to a neuro it seems likewise a no brainer "waddaya' talkin' about, it's autoimmune".

Whether other people need lots of training to be able to see it is an issue; lets hope not. Cureorbust got his done and they only could see one abnormal reading, but is that because if Z had been there he'd have seen 2 and they just were not as good at seeing it?

What remains to be seen is whether relieving any possible strictures helps at all; it may not....(though logically I can't see how leaving a blockage there and venous congestion is somehow "benign")

What also remains to be seen is whether or not there is some epitope spreading from the lesion area, like this:'
congested vein+ leaking stuff=lesions
lesion +injury=imune activation to repair the area
immune activation and vigorous response = accidental "self reactive" antigens

Epitope spreading is possible in many situations. They know for example in mice with CPn that epitiope spreading and autoimmunity can be a consequence.

The good news about that is that in those kinds of situations ie rheumatic fever, they are self limited just ike EAE is in mice, so that would not mean that people would necessarily need lifetime suppression. These things are all unknown it may be a long time before the whole entire thing is understood and all of the rmaification of this can be even nown much less addressed.

So there are a lot of things still to learn about this at this point it is not a treatment but an idea.

I am at a point where there are no options for me: I have had no inflammation to speak of since I went on copaxone many years ago. I was normal then and I am now very disbled though all that time I remained a poster child for how well cop controls inflammation.

I sent my last MRI to Dr Kerr and he said no inflammation you can't do regvimmune it will not work. My neuro won't prescribe novantrone because all his patients got heart damage with little reward so he won;t prescribe it any more. he offered that tysabri will not work for me cause of the ifnlammation deal, but offered he'd give it to me if I want on the off chance it might do something. Well the side effect profile is tooo grim for "off chances".

I did abx and they helped a lot in terms of energy and clear headed ness, but I progressed. IS that because of veins?

Are we gettting the picture here? I'm not talking about this cause I am dispassionate: I'm talking about it cause I got nothing so yes I am gung ho here too, maybe inappropriately so.

I keep looking for the deal breaking fly in the ointment and I ca't seem to find one.

But it feels really really good to know this has come out now. I have a new life in it. I'm kind of thinking maybe I can get the bioness leg lifter thing and walk a little instead of dragging, and maybe I can only be a person how uses a chair once in a while like at the airport if the Z stuff pans out and we can stop it here. And instead of circling the drain I feel like maybe, just MAYBE, we got a plug

It is too early for people to make treatment decisions based on these new ideas; people should do what they'd do otherwise with their doc's help. We'll all REALLY get this when it is out.

But if you are like me: its almost like a dream to discover suddenly against all expectation that someone in a completely unexpected quarter has came up with something brand new that FITS (hey, I have great inflammation control, how happy do you think I am with new inflammation approaches?) and it looks like its going somewhere.
Thanks everyone for being part of this really rather fun converstion and lets all hope. Dr Zamboni wants prayers, we can all do that too.
marie

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I just sit and think "what do I have to lose?". Thanks for writing that Marie.

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

Well you're sure welcome, thanks for reading it.

I hope we get more fun information before April4-7 when Z presents his liberation preliminaries at the cxsymposium; that's a ways off

From '99 Venous relationships are seemingly well known--not to exciting but I wanted to add it to the thread for general purposes.


I saw another on I found fascinating that I did not add, it mentioned interestingly that the lesions in autopsied MS brains are generally symmetrical left to right and consistent so a brain has like 49% lesion load in the left and 51% or something in the right.
Blood vessels are symmetrical, of course.

Here's another one



I don't know if we have that one already we may but I wanted it here too

Wonder what treatment would be like if the Zamboni hypothesis is proven and they start doing surgery to remove the blockages?

This site is a site for an endovascular clinic in which they step by step line out what you go through to get stents, atherectomy (removal of a plaque) etc. Several times the idea of what would be done IF we can see that we all have these strictures/blockages in the veins has come up on this thread, so I wanted to add this so it is here for posterity.

If you had a plaque blocking your internal jugular vein it might be something like this, though this is not a jugular vein but an artery:
http://www.mmpc.com/atherectomy

The difference between treating an artery and a vein is not insignificant, arteries are pulsing all the time with the heartbeat and more delicate to work on, they are more likely to have trouble after the repair (because of the pulse) than veins are, which is what we'd be needing.

Anyway fixing a blocked blood vessel is pretty common procedure.

Hi all.

I may be wrong here, but I have the feeling that the walls of the arteries are way thicker and stronger than the ones of the veins. The pressure in arteries is much higher than in veins.

Any thoughts?

sou

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Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

You're right, sou.
Veins have thinner walls, and larger lumens (or openings)
Arteries have thicker walls, and more narrow lumens.
Arteries have to be tougher, because they have to be able to withstand the pumping pressure of the heart.
It's easier for a vein to become distended or ruptured than an artery.
I think Marie's comment on arteries being "delicate" meant that they are more difficult to operate on than veins. Venous endovascular surgery isn't a huge deal. Arterial surgery is more complex.
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

Here's a reference to a vein surgery itself, this one in the femoral for lower leg venous insufficiency

FIND IT HERE

And yes the delicate issue is that the artery pulses so if a clot forms in the surgical site it can break loose and get pushed somewhere it does not need to be. If you have a carotid endarterectomy (the acrotid is an atery) one side effect that *could* happen is a clot to the brain which is where the carotid goes. Veins can get clots too but they tend to sit there cause the circulation is sluggish so they can be treated with anticoagulants right where they are...NOT that it is ever good, but I'm jsut saying.

The vein walls though are a little slack and baggy when vericose, the valves may be incompetant and need repair so the veins may be more delicate in that way where in an artery you can just scrape out a plaque in a vein it may need more like a surgical repair. All of that is totally speculative I have no earthly idea what the needs of MS patients with these putative "strictures" will be. Totally speculative!

and do not forget, the most common failure Zamboni presents for MS is in the valve, not the vessels.