Think Twice if you have mild MS

[scorpion]

let's not dichotomize please folks. no need to polarize the debate again, it's already been done.

Is there some rule I am not aware of?? If so please point it out so I can follow it.

[Lyon]

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[jimmylegs]

not biting scorp.

[newveins]

I agree, I would not go for it if I had mild MS. I had angioplasty about a month ago serious stenosis and still zero imrpovement. I am probably a little worse simply due to the trauma of the procedure. Not only did I not improve, but now have to worry about getting even worse if restenosing.

Yes, think twice this is not the cure all there are risks and we will know much more in a year or two and it will be much safer if by then it is proven to have longterm benefits.

[Cece]

Annbanan, I hope in these next few days this turns around for you. It was good of you to share the caution. Angio only is better than stents, but can still result in clotting and regrowth. If you were close to your doctor, I have to assume he'd pull you back in for a Doppler scan, especially since what you are describing is that you have worsened.

[Billmeik]

get a lot of sleep. That trip is tough on the system. Also if you are mild and the people you were with are more progressed it can have some nasty psychosomatic effects. It's like your body learns how to have the disease from being with others. Forget you'sick. You have only mild ms remember?

[1eye]

Well, I really hated to see the day I would agree with 'concerned', but in this case he may be part right. I just finished watching a couple of the videos from Dr. Sclafani's symposium. I learned a lot, but a large lesson was that there are very often valves in the middle of these stenoses, and these valves just should not even be there. The ballooning, in many cases, is meant to destroy these valves which are deformities. I have heard of valves which were ballooned, and then once they were gone, reflux was allowed to happen, where it was not occurring before.

I think one thing which can go wrong is a valve being removed that was actually working and keeping reflux out. One of the doctors said that his end point was that all reflux is stopped. That sounds good to me: reflux is very damaging and is *like* a narrowing or stenosis in the sense that at the least it will slow the rest of the flow. What is making you sick might be reflux. Or you may be reacting to meds. A doctor is your only friend, and this speaks to the terrible dereliction that is happening to CCSVI victims in Canada.

But there are experts in Barrie and elsewhere who can tell you if you are restenosed, have a clot, have reflux, etc. That is what you have to do. I think these people want to help. Good new is if you are just having a bad reaction to meds, it will clear as soon as you stop taking them. More serious would be the reflux situation.

However another thing said I think by Dr. Siskin was that there seems to be no reason to think people with one type of MS versus another will benefit more or less. Dr. Zamboni speculates RRMS patients benefit more. It is one of the many things we just don't know yet.

You can decide whether the reflux (if that is a problem) is in your jugulars based on postures. If upright you feel better...

I think because of our medieval medical system we seem to have in Canada, it is very much more difficult than it needs to be getting help if you have been saddled with a diagnosis of 'MS'. One gets into the limbo where vascular guys want a referral from a neurologist, who might tell you to go back to Poland or somewhere. There is help, but it may involve travel.

Another problem that can happen is clots. If you have one it is fairly serious. You must be seen in that case, and it is to be hoped that it is still early enough and it has not blocked the vein completely.

I wish you the best of luck: sounds like you have already had the worst. But no-one should forget: things can go wrong, and Murphy and some Law or other of Thermogoddamits says if they can, they will. No matter how bad it is, it can always get worse. Expectations for this procedure, of course, are way too high, and need better management.

Though it may sound hollow, *I* think everyone here is rooting for you and wants you to feel better.

[Jugular]

This is a follow-up care issue. The problem is not the mild MS, it's that it's being done as a one-shot treatment with no safety net for someone who restenoses.

Annbanan, have you been in contact with your doctor who performed the treatment? Are you on anticoagulants? Have you seen a neurologist? If you are on anticoagulants, please inform your neurologist if he/she diagnoses this as an MS relapse and prescribes steroids, there is some interaction there. Would traveling to the US for follow-up care be a possibility or is it completely not possible now?

You assume right away that when someone does worse after treatment it is due to restenoses. The other possibilty is that the liberation procedure has no therapeutic value and can, like any surgery, make people feel like crap.

annbana good luck and I hope you feel better soon.

As a CCSVI proponent I'd have to agree that Scorpion has raised a logical possibility that has to be considered. Perhaps a more pertinent question, though, is how could altering her cerebral drainage elicit MS symptoms?

[Lyon]

.

[Cece]

I thought I did well by even mentioning a neurologist in my initial post! They are not completely worthless; a sudden increase in fatigue can be a sign of a MS relapse even without any other new symptom. This could be entirely unrelated to blood flow; even in CCSVI theory, this soon after the procedure there would still be iron and damaged neurons built up in the brain and the immune system may be activated to clean it out.

I agree that a minimally invasive outpatient procedure done under limited anesthesia can sometimes make people feel like crap. (No surgery here, folks. ) So can transatlantic flights, if one was involved.

[thornyrose76]

I am sorry to hear this but beforehand, did you have a clear diagnosis of MS? To add it's just that you stated you didn't have a clear diagnosis...

[Lyon]

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[tzootsi]

Ann,

So sorry about your current state. I'm not a doctor, but here are my thoughts:
Yes, you could have a clot, but that seems unlikely if you just had ballooning, and you are on blood thinners. Are you prone to clotting problems? Is it possible you are coming down with some type of bug from traveling? Any type of flu, cold, infection, etc can certainly magnify ms symptoms. Are you able to contact the doc who did the procedure? You might want to consider a pm to Dr. Sclafani. Being in Canada makes things complicated for you. I know of an IR in the eastern US who might be able to see you, but again, you would probably have to pay out of pocket. PM me if you are interested.

[Brainteaser]

Just my opinion, but as I've said before, CCSV I treatment is more art than science. I think time will show that good outcomes will follow from the quality of the treatment. It's not an all or nothing concept.

[Jugular]

So from the looks of the majority of these posts maybe we can all agree that placebo doesn't play any part in people who experience miraculous results after liberation, but on the other hand everyone who doesn't experience miraculous improvement after"liberation" is either experiencing nocebo or is mentally lacking?

If anyone mentions less than stellar results from "liberation" they come out of the woodwork to come up with a "logical" explanation why the "miracle" isn't.

The world is watching and while objectivity is needed, it's nowhere to be found.

We are CCSVI. Resistance is futile.