Teri Garr on Larry King tonight

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Osmond's MS comments

Postby MichelleMM » Thu Jan 20, 2005 3:04 pm

Take a look at osmondms.com. It has some interesting comments, then click on the left Daval-It worked for me. This explains the treatment Osmond is undergoing.
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Postby OddDuck » Thu Jan 20, 2005 3:16 pm

Yea, I saw that article (about a year ago). That was when he went to England and underwent treatment with Aimspro, which isn't available here in the U.S.

He's no longer on that now, since he came back. That's why there was some confusion. He's not on "injectables" anymore, just "pills" he said.

Deb
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Postby RevLeonidas » Thu Jan 20, 2005 5:44 pm

OddDuck wrote: I went back to investigate a couple of things, and you know what I noticed? The NMSS MUST have at least consulted with some researchers regarding your inquiries because their "notice" on their website regarding the use of LDN is signed like this:

Clinical Programs Department
in collaboration with
Allen Bowling, MD, PhD
Rocky Mountain MS Center

Anybody write to the Rocky Mountain MS Center or Dr. Allen Bowling? It looks like THEY (he) might be the ones who need convincing!


Deb,

As a one-time patient of Dr. Bowling's, I can tell you first hand that writing him, or his research staff (Tom Stewart), about LDN will get no response. Dr. Bowling is a fine physician, and his research results do gather wide peer support; however, like the majority of the medical industry, their research is suspect.

I say "suspect" because instead of following-up positive events, factual events like an improvement of physical ability and a reduction in lesion volume, they excuse it as an anomoly because it doesn't fall into the agreed upon, and trusted, MS theory.

I mean, come on; we have all seen the information sheet included with any of our ABCR drugs that show that MS without treatment will gradually cause the patient to progress up the EDSS scale. With treatment, it's expected that the patient will continue up the EDSS scale; however, with the currently approved therapies, at a slower rate.

So, what would you expect if they found a patient that wasn't going up the scale as expected? As a research professional (non-medical) factual events always have more weight than theory, no matter how widely supported the theory may be. Not so in the medical industry. What should be questioned isn't; instead, it's explained to preserve the integrity of the theory.

As a guy who studied entirely too much Mathematics in college (I do have a minor), don't even get me started on statistical findings: does anybody know anything about Fibonacci and Golden proportions other than us finance geeks or math freaks?

Deb, have you ever seen how the standard deviation of a clinical trial is calculated?

Be Well,
Rev. Leonias
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Postby OddDuck » Thu Jan 20, 2005 6:18 pm

Hi, Rev! How are you!!??

Oh, yes...........I totally understand about "statistics" and the "numbers game". You need say no more. :D (But no, I don't know the "exacts", only that numbers can be, and often are, manipulated in MANY interesting ways.)

Hey, I didn't say it would WORK writing to Bowling, I only asked (in a round about way, I'll admit) if part of the problem may also have COME from Bowling, if it was thought about further. Which you basically just reinforced. :wink: And as you said, that doesn't reflect on Dr. Bowling's skills, etc. at all!

Nor am I expressing an opinion either way (pro or con) regarding LDN, either.

We're on the same page, as they say, Rev!

Hey, as always, you be well, also! (I love borrowing that from you from time to time.) :)

Deb

EDIT: You know what, Rev? What is really lacking these days in my opinion, that you just mentioned? The fact the people (medical personnel or otherwise) are so discourteous as to not even respond to others. It's SO rude! What ever happened to basic manners. Ya know? It drives me crazy!
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Postby Arron » Thu Jan 20, 2005 8:36 pm

Rev... a pretty neat article idea would be if you did a "tutorial" on clinical trial math... we would love to publish it!

just thinking out loud ... :)
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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Postby RevLeonidas » Fri Jan 21, 2005 12:44 pm

Aaron,

Yeah, it would be a pretty neat article; however, I only have minor knowledge about mathematics; that is, just enough to know that the medical industry is following some scary logic.

A better approach (this is me thinking out-loud) would be to find a mathematics professor who happens to have a personal stake in MS: like his/herself, a friend, or a family member. This is a person who could show the insignificance of the subjective discipline of Mathematics called statistics, and how it applies to the clinical trial model.

Be Well,
Rev. Leonidas

"There are three kinds of lies: lies, dirty lies, and statistics."
--Mark Twain
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Postby OddDuck » Sat Jan 22, 2005 7:37 am

You know, I'm going to do something here a little "unorthodox". Don't ask me why.

I know a lot of people from other MS message boards post here, too, and I have gotten away from posting at all to "MSWorld.org", but I still read it from time to time.

There is a thread going there: http://msworldboards.org/vbulletin/show ... hp?t=25483 wherein they are talking about the very subject we are here. Basically, the "portrayal" of MS to the general public - which unfortunately, the general public mainly is engaged with something like MS via television. Hence why it may be more important than we know to have a television spokesperson for MS who is NOT a "celebrity".

Anyway, take a jaunt over there, and see the comments on that Board (the comments get a little off track for a post or two, but then gets right back on). I found it really interesting anyway. You might, also.

Deb
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