This Is MS Multiple Sclerosis Knowledge & Support Community

Well said, CD.
Thank you.
Rose2

scorpion wrote:

Coolcatcarrie wrote:Scorpion - why are you so bothered about trying to prove us positive pro-active go-getters wrong??? I don't understand you at all? Because we have tried ccsvi - we already know we're right!! Haha - what a sausage! Just go dig yourself a hole if that's your attitude? X
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What bothers me is seeing people encouraged to get angioplasty 3-4 times and spend $20,000- $30,000 until they see SOME kind of MS symptom improvement. When new people come to this site you want them to believe angioplasty beyond a reasonable doubt improves symptoms of MS however I am sorry but until someone shows me proof that is the case my doubts will continue. Proof, for me, comes from studies showing that CCSVI is more prevalent in MS than in the normal population. Another way to prove that addressing CCSVI is beneficial to MS patients is through long term followup of people who claim they had improvements after angioplasty and sorry this restenosis explanation is not going to cut it. By the way everyone keeps discussing "the proof"people are seeing. How anyone can anyone can make sense out of the countless stories people have posted after their procedure baffles the mind. To say there is some pattern emerging is not true. Some people rise from wheelchairs and run marathons while others notice small improvements in their walking ability after the procedure. Some people do not see results to later. Some people see results than they go away. Some people don't have improvements, than have improvements, than do not again. Some people need three angioplasty procedure to see any improvements. Some people NEVER see improvements. Some people claim to get worse. So what proof and which results??????

and again I'll ask, how will you feel if you wait for these "studies" you seek (and they take 11 years).

In those 11 years, your MS progresses significantly - to the point liberation will not be able to give you any of those improvements. But at least you know liberation and CCSVI were legit all along.

And how will you feel knowing you waited 11 years to try liberation ... and what could have been had you tried it 11 years prior?

That's a VERY real possibility ... ask anyone who has been liberated ...

Since you guys seem to love redundant repetition:

While you wait for scientific validation, I live.

Coolcatcarrie wrote:Proof is in the results people are seeing, anyway I'll go away my proof and you keep looking for yours.

I take that response to mean that, despite what you said earlier, you aren't able to supply a link in which scorpion or I stated that improvements after "liberation" weren't real?
Your apology is accepted.

Lyon wrote:

Coolcatcarrie wrote: - I fail to see what you are achieving by trying to tell us that it's not real???

I give up, you're right, just link where scorpion or I told someone that it isn't real to refresh my memory.......with it in mind that saying it isn't proven isn't saying that it isn't real.

I had a business partner 20+ years ago who, when anyone would disagree with him, would repeat exactly what he had said before in a louder voice. Since he knew he was not wrong, it must be that we misunderstood him.

I know I have confused in my mind the various writings of the skeptics and probably attribute things said by concerned or Malden to things said by Lyon or scorpion.

Perhaps, just to set the record straight I was hoping the two remaining skeptics, and anybody else, would give us all a single clear and consise statement of their agenda so I will no longer have this confusion.

I wil start. My agenda is to share information (give and take) with others who have been diagnosed with MS. I am especially interested in sharing information with people who have had their CCSVI treated.

CaptBoo wrote:My agenda is to share information (give and take) with others who have been diagnosed with MS. I am especially interested in sharing information with people who have had their CCSVI treated.

At that time we didn't call it an agenda but years ago we had a thread like this at thisisms just to let people know where everyone is(was) coming from. Additionally I've done it periodically, especially in the last year or so with the influx of new members.

I'm kind of run of the mill so I wouldn't be surprised if my description isn't too much different than a lot of other people.

My interest in autoimmune diseases has increased through the years and reached a pinnacle when my wife was diagnosed with MS in 2006.

I guess you could say that my interest started around 1970. That seemed like the time of highest national concern towards the increasing incidence of autoimmune diseases per capita and the absolute consternation that it was causing the scientific community.

Looking back on it, that time was also probably the heyday of John Kurtzke (who has since become a personal friend) and his vast etiology research and position at the VA probably insured MS research prominence in the national news.

At exactly that same time in high school we were learning about the vitamin deficiency diseases and that the mystery surrounding their cause(s) had absolutely baffled scientists for hundreds of years causing absolute conviction that the cause(s) were complex beyond human understanding. In the end the causes(s) were as simple as eating an orange/whole grain rice, etc....

With autoimmunity being the big thing in the news at that time it came to mind that THAT cause absolutely confounding scientists was also no so complex but so simple that our generation of scientists were not seeing it.

In my 56 year interest in science it's become obvious that NOTHING that's ever been solved has been as complicated as originally thought so it's almost certain that the cause/mechanism of MS won't be either.

When my wife was diagnosed with MS it seemed obvious that the LAST place to hear of the newly discovered cause of MS would be at the doctor's office and despite the obvious need to filter the "truths" you hear on the internet, the internet is about the first place you would hear about "potential" MS cures and that is where I wanted to be and how I happened to plop my ass at thisisms where I would be the first to know when the "cure" came around.

I don't have an agenda.

Since Emma underwent the procedure at EHC I've felt obliged to provide as much inforamtion as I can to others considering the treatment, on the waiting list and about to go under the scanner.

I feel having held the hand of my partner through everything then see here come out fo the other side and show improvements on a daily basis that I should share every part of what she's been through with as many people as possible.

What I find hard to swallow is almost all of those who are not in favour of the procedure have not undergone the procedure, know anyone who has undergone the procedure and have no intention of undertaking it, yet they are entirely convinced it's ballderdash & piffle and in some cases positively dangerous or even fraudulent.

Our 12 year old daughter hates green beans, she's never even tried them, but she simply knows they are disgusting and will do her no good whatsoever......ring a bell?

My comments are based on nothing more than Emma's and my experiences of the EHC in Scotland and her life after the procedure. Anything other than that I am not qualified for nor in a position to speculate.

While your story may be similar to many, it is very different from mine. I had only vaguely heard of MS when I was diagnosed in 2008 . I had no specific interest in medicine or science, I was a filmmaker. When diagnosed I was told I would be in a wheelchair in five years, here are some drugs that probably won't help, comeback and see me every six months. That's when I started my own research effort, which eventually led me to TiMS.

For me the autoimmune theory never made sense, and I can only say that it just did not feel right for me. I have always been convinced that my neurological issues were rooted in trauma. I crushed my fifth cervical vertabrae in 1988 and had cervical fusion of c-4/5/6. Since I think of my case as being different from traditional MS, I try not to discuss that which I know nothing about. I do share similar neurological issues with many people diagnosed with more traditional MS.

After trying the neuro-recommended drugs, and becoming quite sick for months, it became obvious I would have to find a different direction. I have tried bee stings, hyperbaric oxygen, IV alpha- lipoid acid, LDN and now venous angioplasty. While the others gave me temporary increases in energy, or brief reduction in spasticity, only the angioplasty has relieved most symptoms for five months now, so perhaps you can understand my desire to pass that information along to others that may be in a similar situation.

EJC wrote: Our 12 year old daughter hates green beans, she's never even tried them, but she simply knows they are disgusting and will do her no good whatsoever......ring a bell?

That's an interesting analogy but aside from Colin Rose and MAYBE Mark Freedman, who do you think it pertains to?

It seems that you spend far too much of your effort fighting an enemy that doesn't exist. As insulting as it may seem, saying that which you've seen with your own eyes needs to be scientifically proven isn't saying that it isn't so and isn't saying that you're lying.

It's just stating the absolute truth, which is that the theory of CCSVI may or may not prove to be valid and remains to be proven.

CaptBoo wrote:so perhaps you can understand my desire to pass that information along to others that may be in a similar situation.

I absolutely do.

My wife was diagnosed at age 46 (which statistically points towards a more aggressive than normal MS course) and had just been diagnosed a couple of months before entering the Tovaxin IIb clinical trial in which the entrance MRI showed a new enhancing lesion in addition to the "at least seven) lesions she was diagnosed with (which also made it seem that her MS course was going to be aggressive).

In the five years since her diagnosis she hasn't experienced anything else "MS" and I personally feel that it HAS to be due to the Tovaxin...BUT like you I'm not in a position of being able to prove it and therefore can't honestly and morally stand on the rooftops and shout to the glory of Tovaxin.

Other than honesty and morality I guess we're not so different.

This may be where there is confusion. I know that concerned call me a liar and Malden far worse. That's why I trying to get the stories straight.

Also I can't think of anyone on this site that is not in favor of more scientific study on CCSVI. So we have something in common. The only difference is specifically what needs to be studied and how to go about it. That debate on this forum is quite healthy without becoming personal

The other difference is that some of us felt that waiting for the studies would be detrimental to our health, while some feel doing the angioplasty before completion of the studies would be detrimental to their health. No one gets to make that decision for the other, so let's please respect each personal decision.

Mostly, if I say my symptoms have significantly diminished since angioplasty, please don't tell me I don't know what I'm talking about.

Other than honesty and morality, I guess we're not so different.

Am I reading that right? It seems to say that we are not so different except you are moral and honest and I'm not.

CaptBoo wrote: Mostly, if I say my symptoms have significantly diminished since angioplasty, please don't tell me I don't know what I'm talking about.

I can easily see why your past partner developed that habit. I'll put it in caps this time.....TELLING YOU THAT YOUR PERSONAL EXPERIENCE CAN'T BE TAKEN SCIENTIFICALLY AS THE GOSPEL (despite the fact that scientifically, the gospel isn't taken as the gospel) SHOULDN'T BE TAKEN AS TELLING YOU THAT YOU DON'T KNOW WHAT YOU'RE TALKING ABOUT.

CaptBoo wrote:Other than honesty and morality, I guess we're not so different.

Am I reading that right? It seems to say that we are not so different except you are moral and honest and I'm not.

That was the best I could to. Interpretation is up to you.

Boy, you're quick to turn. I have never said my feelings should be taken as science gospel, only at they are my feelings. You must have me confused with some other zealot.

I do know that I had SPMS, my balance and fatigue were getting worse each day, and that upon getting off the table both issues were resolved. That's what my body told me. It's up to scientists to decide if that has scientific merit. So as long as I preface that statement with, " that's what happened to me, if may or may not happen to you.". Do that solve your morality and honesty question?

But never mind, back to business as usual. You shouldn't waste your time with immoral and dishonest people.

CaptBoo wrote: But never mind, back to business as usual. You shouldn't waste your time with immoral and dishonest people.

Ach! But the world is teeming with immoral and dishonest people. You want I should become a hermit now?