This Is MS Multiple Sclerosis Community: Knowledge & Support

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This is the first thread where this is being bantered about logically. From an SP, first hand account it is 100% apparent that even if my MS is 100% no longer active, that I will always have a certain basket full of physical deficits.

Think of a spinal cord injury. Let's use Superman since he's a case everyone's familiar with. It's not like he fell of a horse every day. The injury causing event (in our case MS) is not active, but the damage is there. That is why he was so adamant concerning stem cell research. Until I can grow some new nerves (fingers crossed), I'll not be able to empty my bladder even though I may not be getting worse.

I think the hysteria (I cringe to call it that since I was right there, let's call it enthusiastic hope!) arose when the first few FULLY IN THE CAMP OF INFLAMMATORY RRMS had their procedure, the inflammation calmed down. And since the outward expression of their symptoms was CAUSED by said inflammation, then those symptoms abated. I did, indeed, have things that got better. To me those were the parts of my disease that still had an inflammatory element. Those symptoms that haven't gotten better were obviously caused by damage that will need a 'repair man' to fix. CCSVI does nothing ACTIVE. It is an event.

Now we all should note that my general sense of stability and solidness are night and day to when I felt my disease was actively working on me. Just the lack of confusion and head swooning and needing to constantly shut my eyes. Well that has given me so much life back becuase I can stay engaged in what I'm doing. That's so huge I can't even describe it. I couldn't stay engaged with a problem long enough to solve it, a conversation long enough to finish it, and so on.

So I fully think CCSVI is something we should all have looked at and if there fixed. It's been miraculous in terms of QOL improvement, but I don't feel 'cured' at all. Bob's pointing out that there are many different perceptions of what cure means is very valid. To many, cure means you 'go back to normal'. If that's your definition, you'll be left wanting if you want to say this is a cure. If you want to say "I haven't felt this good in forever and I actually look forward to tomorrow and actually think about the future", then you better find someplace to get this done. I say that only because that's what it's done for me. I'm happy as a pig in shit to have had this done because, to me, it's the best choice we have in terms of impact on QOL, and isn't that what a cure would be about also? So yes, this is a conundrum defining what IS considered a cure.

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

Because MS is a progressive disease, I believe that when you can say "MS will never make me any worse than I am today," you are cured. Repair I think in the case of MS has to be separate from cure.

Is this a 2 step solution?

1) Open the veins = "Liberation Procedure"
2) Regrow the myelin = Biogen "LINGO-1" in human trials

Either way, you must open the veins if there is a problem found.

Then worry about repairing shop.

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If you can't explain it simply, you don't understand it well enough. - Al Einstein

Well, you see, after the liberation 4 months ago, my mobility has gotten BETTER. Is it then not a cure according to your understanding?

Bravo Loobie!! Bravo.. I would love to read this piece at the upcoming MSS AGM..

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it's so hard to base good results on someone with RR ms because of the nature of the disease but when someone like Loobie who has SP ms and has been that way for a while and WAS constantly getting worse, to say he is no longer progressing is more valid in terms of whether it's done something or not. to me anyway.

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Had ms for over 19 years now.

Like others have said, it's not that simple. There are some things that the body can't repair by itself, I assume some sort of stem cell treatment will be required in the future to repair all of the damage done by MS.

You are right, of course. I was oversimplifying. I meant that in the context of a "cure," the first step is to halt the progression. Then we can allow the body to heal. To what extent the body will heal is unknown and likely very complex.



"No way, shape or form" has as many meanings as the word "cure."

I am sick of excuses.

You take drugs, you get better -> It 's the drug

You take drugs, you get worse -> It 's the MS which is difficult, not the drug ineffective

You take a placebo, you get better -> It 's the MS relapsing blah blah blah

You take placebo, you get worse -> It 's the placebo. You should take a real drug

Excuses are like a**holes. Everybody has one. I have to admit that there are no more effective drugs in this world than those available for MS. But, despite having such wonderful drugs, it is sensible for us to seek medical help for other problems we may have, i.e tooth decay, broken arms, myopia, back ache, venous insufficiency, heartburn etc.

I don't want to draw any conclusions. I am posting some random, spontaneous thoughts.

sou

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

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I agree with Bob's succinct summation.



Sharon has been on 3mg LDN for over a year and her progression was not slowing one bit. Other than a little relief from leg pain it did nothing to improve her MS symptoms or stop the progression.




Yay, Loobie! You were a big influence on our decision to take the plunge. Your honesty and detailed progress notes gave us hope that SPMSers could be helped by this procedure.

Sharon is doing better and better, despite having a UTI and some bad anti-biotics. She has nothing but good things to report after having the procedure. Improvements like heat tolerance, more feeling in legs and hands, improved memory and mood, breathing easier--lots of things are better. No other MS therapy which we have tried has made even the slightest dent in her downward progression. Venoplasty to correct her impaired right internal jugular flow has been the only thing that seemed to do anything to restore any of her lost function.

Now we'll have to see about getting Superwoman back up on her horse.

Andrew

I love this thread! There are many things we are learning about CCSVI and at this time we seem to talk about it as a static thing! Many things that we have used to "measure", for want of a word, our MS are based on statistics. Statistics show what ever you want them to. If you look at how they are assembled and directed they can show black and white are one in the same. e.g marriage is the greatest cause of divorce.
I think that allot of what has been assembled as fact about MS needs to be reviewed. In the same context we need to look at CCSVI as an emerging approach to MS. There will be an avalanche of new beliefs on MS and many other diseases now that the flood gates are open due to this new awareness of the importance of life flow/ blood flow.
What we thought previously will be no more!

Another thing that is becoming apparent is that the progressive forms of MS may be the leaders in of knowledge in our disease because of the stability of the disease and its progression. Although slower to asses the outcomes of any treatment this form of our disease may become the leader in treatment, and understanding of the disease processes. To be able to diagnose the disease in a new and different way which will enable early treatment would be my goal, along with halting the disease in its tracks.