This Is MS Multiple Sclerosis Knowledge & Support Community

Lyon wrote:I haven't heard and would be interested in what organized medicine thinks of the results released from Kuwait so far.

...

Others can and will do what they want but, for me, a suitable American comparison...

Xenophobia is a hard task-master. It is behind a lot of the FUD being offered about CCSVI theory. You are doomed never to know the truth if you expect to hear it, whole and nothing but, only from people who look like you and vote like you.

I assume you are the most trusted representative of organized medicine. I assume also you think many of the doctors heard from here are disorganized.

1eye wrote: Xenophobia is a hard task-master. It is behind a lot of the FUD being offered about CCSVI theory. You are doomed never to know the truth if you expect to hear it, whole and nothing but, only from people who look like you and vote like you.

If you ever have moments of coherence, we should talk.

1eye wrote:I assume you are the most trusted representative of organized medicine. I assume also you think many of the doctors heard from here are disorganized.

As mentioned before, who and what I am was documented long before anyone at thisisms had heard of CCSVI and yes, most people would consider the CCSVI research we've seen so far as "disorganized". The test: have any questions been answered yet?

Lyon wrote:If you ever have moments of coherence, we should talk.

Cute, but no thanks.

...
The test: have any questions been answered yet?

Passed.

Lyon and others are trying to convince thisisms readers to wait for trials. I disagree along with many other posters. To explain the my logic of having my restricted veins treated by balloon venoplaty. Here is the exchange with added comments from me.

Initally MarkW wrote:
Malden and Lyon try to mislead by asking if the same symptoms are found in the general population. So what. This is not relevant to pwMS, who have restricted major veins.
MarkW adds: Fingernails are not a healthcase symptom.

Lyon wrote: What you are saying is misleading. I don't know what your definition of "symptoms" is but I have never asked "if the same symptoms are found in the general population".

MarkW adds:
In healthcare a symptom is observed problem which may contribute to to development or progression of a disease. So restricted veins may contribute to certain diseases but may be present in others without impacting their health. Look up restricted veins and liver problems or diabetes to see what is done in these cases. (Please tell me if you find double blind placebo controlled trials of the de-stenosis treatment)

Lyon wrote: On the other hand I have repeatedly said that it's essential to determine through equal and accurate testing whether or not the same rate of stenosis affects the general population as people with MS (at this point venous catheter).

MarkW adds:
This is where Lyon is misleading you (read his two statements). It is not necessary to prove that a problem/symptom is absent from the general population in order to justify treating it in a disease state. Tests for surgical trials start with case studies showing that a surgical procedure helps the disease group. We need case studies of de-stenosis in pwMS showing stasis or improvements of MS after de-stenosis.

Lyon wrote: Athough lots of people are convinced that a specific relationship between MS and stenosis has been shown, it's obvious that the majority of the medical community begs to differ.

MarkW adds:
I have not seen sufficient evidence to say a specific or causal relationship exists between MS and stenosis. As others have pointed out over 1000 pwMS have been de-stenosed and the vast majority are positive about removing this symptom. I am one of this group.
The vast majority of medics have not thought about this subject, let alone assessed the evidence. MS neuros are creating opposition to gathering evidence of case studies on de-stenosing pwMS. When the evidence of pwMS reaches 5,000 cases a it will be impossible for MS neuros opposition to be justified. I hope we reach this stage during 2011.

I hope my thoughts help anyone considering de-stenosis to take the step. For many people cost is an issue but if you can raise the sum required, the case study on yourself is worth it. The nay sayers
will always give reasons to wait. Unless your RRMS is progressing very very slowly I recommend you plan to be in the first 5000.

Kind regards,
MarkW

these year after mri's are so valuable! Does anyone know how many there are? I for one should be booking another apt and am slow moving, largely because I don't see any proof. This is proof!

9th grade stuff here from my rusty brain --

(it's a joke, get it?)

Hypothesis:

If narrowed veins contribute to certain symptoms in an individual, then angioplasty of those veins will improve those symptoms.

Indirect proof:

Suppose angioplasty does not improve the symptoms -- then narrowed veins are not the cause.

So:

Given that angioplasty does indeed improve symptoms in an individual --

Then narrowed veins do indeed contribute to certain symptoms in that individual.

Or do I need a truth table?

Noooooooooo, sorry Billmeik ... it's not a part of a study those MRI's so it doesn't count. It's all anecdotal ... there's no proof in that.

IT's never going to be enough for some people. The next thing they'll cry is that each doctor is using a different type of balloon or stent, or entered from a different vein or used a different contrast dye or something else so it's not all the exact same protocol.

Nevermind the fact that when I had my torn ACL knee surgery it wasn't done the exact same way as someone else's torn ACL knee surgery ... but for CCSVI everything has to be exactly kosher and squeaky clean - plus no DMD's or any other medications because we don't know if that's tempering results or not ... so let's all wait 10 - 20 years before anyone has any more CCSVI corrected. Let's all just slow down, please ...

JOKE.

MarkW wrote:Lyon and others are trying to convince thisisms readers to wait for trials. I disagree along with many other posters. To explain the my logic of having my restricted veins treated by balloon venoplaty. Here is the exchange with added comments from me.

I've never once said or tried to convince anyone to wait for trials and in fact many times have said that MS is such a heinous disease that MS patients should be given free rein on treatment choices.

MarkW wrote:I hope my thoughts help anyone considering de-stenosis to take the step. For many people cost is an issue but if you can raise the sum required, the case study on yourself is worth it. The nay sayers
will always give reasons to wait. Unless your RRMS is progressing very very slowly I recommend you plan to be in the first 5000.

That kind of tells the whole story right there. My part in this has always been to attempt to tease the truth from the bull ONLY. I don't have anything to sell and I've never tried to talk anyone in or out of anything.

I'm not sure of the reason but there is no doubt that you actively are trying to talk people into it before safety and efficacy have been proven. I hope these people appreciate your regard for their well being.

Pharmacist you say?

Yes Lyon I am a UK registered practising pharmacist, you will find that I am registered with the UK's General Pharmaceutical Council. Unlike you I am open about my professional standing. Why are you hiding behind the smoke screen of 'Lyon'.

I receive no payment from any person or organisation for anyone who undergoes de-stenosis.

The safety of balloon venoplasty, which I recommend is proven. If you have data that this common procedure is not safe please post it. Otherwise confirm that balloon venoplasty is safe.

Efficacy has been witnessed by over 1000 pwMS, so far. When the pioneering vascular specialists have treated 5000 that would be overwhelming data for de-stenosis of major veins in pwMS.

The truth is simple. De-stenosis of major veins in pwMS will reverse a symptom. This may or may not help MS. It should be the personal choice of every pwMS, and I am fighting for those rights.

I repeat my personal and professional recommodation:
I hope my thoughts help anyone considering de-stenosis to take the step. Unless your RRMS is progressing very very slowly I recommend you plan to be in the first 5000.

MarkW

Hello Bluesky,
Please forgive me if I change a few words in your post:

Hypothesis:
If narrowed veins are present in an individual pwMS, then venoplasty of those veins will reverse this restriction.

Indirect proof:
Suppose venoplasty does not improve any symptom of MS, then narrowed veins are not related to MS in that individual pwMS.

So:
Given that venoplasty does indeed improve symptoms in an individual -- Then narrowed veins do indeed contribute to certain symptoms in that individual pwMS.

MS neuros and some posters to thisisms do need a truth table.

Kind regards,
MarkW

MarkW wrote:Unlike you I am open about my professional standing. Why are you hiding behind the smoke screen of 'Lyon'.

Why exactly is "Lyon" more of a smokescreen than "MarkW"?? I've been a member of thisisms about the same amount of time that you have and all the info about me you could ever want was easily available long before CCSVI was ever heard of.

If the pharmas were smart enough to "plant" me at thisisms back in 2006 due to the future threat that CCSVI would pose to their drug sales, you are fighting a battle you could never win.

MarkW wrote:The safety of balloon venoplasty, which I recommend is proven. If you have data that this common procedure is not safe please post it. Otherwise confirm that balloon venoplasty is safe.

MarkW wrote:The truth is simple. De-stenosis of major veins in pwMS will reverse a symptom. This may or may not help MS. It should be the personal choice of every pwMS, and I am fighting for those rights.

If the above was any more than your personal opinion there wouldn't be any need for this conversation. Organized medicine would already be convinced of the merit of the theory of CCSVI, which is far from the reality of the situation.

Thank you, thank, thank you, Mark! I knew I was messing it up, and that was exactly right!

And just for fun . . .

"Logic is one thing, the human animal another . . . " -- Luigi Pirandello

Lyon wrote:Why exactly is "Lyon" more of a smokescreen than "MarkW"??...

Because neigh-sayers need to smoke more. We don't blame you. We kind of feel sympathy, but not much.

Lyon wrote: If the above was any more than your personal opinion there wouldn't be any need for this conversation...

Good. Hypothetically typing, since the above *is* more than opinion...?

Lyon said

I'm not sure of the reason but there is no doubt that you actively are trying to talk people into it before safety and efficacy have been proven.

I see that your advice is different from what you do.

Anyone can read for themselves here: http://www.thisisms.com/ftopic-11035-0- ... rasc-.html

You watched and even endorsed the experimentation of an MSer with himself never advising to get under the supervision of a doctor. This man subjected himself to an experiment inoculating helminths in his own body.

You watched it in delight. A few bits will suffice:

Awesome Sheldon! Which helminth are you going to use?

At that point he had just started selling Trichuris trichiura and I had high hopes for that with MS because they don't migrate through tissue so you don't have to go through the coughing jag that you do with hookwork and they've also had an evolutionary long relationship with man so they live up to 20 years so you don't have to dose often and they should have as good an effect on MS symptoms as anything.

It is really disgusting. And you come here to offer advice to people who is treated by qualified doctors?

Hey, I like that thread and I don't see anything wrong with Lyon's encouragment of hookworms. It was a plausible theory before CCSVI came along, IMO.

There is also a huge difference between encouraging one person who performs one at-home experiment and encouraging thousands of people who put themselves potentially at risk (although in my opinion the unknown benefits outweighs the unknown risk) and spend about $10,000 each for a single shot at a procedure that is known to need repeating in perhaps fifty percent of the people.

But whatever we say and do here, I would like for us to say and do with respect.