This Is MS Multiple Sclerosis Community: Knowledge & Support

I posted this under the other topic. Might as well repost iy here.

Rats, I missed it, but read most of the transcript. I see where King shut down Osmond after he mentioned he trial he was on. Now I didn't see the show. So I could have missed something further in the transcript.

KING: And Alan what do you take?

OSMOND: I used to take Copaxil. After a while I went on a study four or five years on that, and then they stopped it and said it wasn't doing me that much good. They had the proof. But I went to England, Larry, and I heard about something over there that I went over to check out. It's called Daval, D-A-V-A-L. And I went over and I went through a whole bunch of tests just to see if I could try it. And they let me try it. And I'm telling you, it worked. It did something positive for me. And I've met two or three people that are almost on remission now. One kid was totally bedridden, but now he's bought a boat and he sailed across the Atlantic.

KING: Is it up for approval here?

OSMOND: So there are things coming, but you can't get it here.

KING: You can't get it here.

OSMOND: That's my biggest...

KING: What do you take, Richard?

OSMOND: It's in England.

You could tell there Osmond was going to possibly mention Aimspro.
I hope there is a replay.


ADJ

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Well, it did occur to me that, maybe, Osmond was taking antibiotics but then, having only read the transcript and seeing what seemed to be cognitive dysfunction, maybe not, because that is one of the first things to correct itself if present. He certainly hasn't seen my husband, anyway.

Who said "Oh, it's not so bad!" by the way? I must admit I only skip read it! Not so bad? I luckily have never been in any real pain, but "Not so bad!" Yeah, right. It wasn't so bad when I only had the use of one arm and little use of either leg. Who really needs a full quota of limbs?

Maybe there are better ways to publicise what the disease is all about than over reliance on 'celebrities'.

Sarah
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ADJ,

As far as Larry King cutting off Alan Osmond, I saw the show and don't believe he did. Alan Osmond was at another site (as was Terri Garr) while Larry King was with the other guests in his studio.

Alan Osmond on more than one occassion would answer a question and then pause as if he was done and Larry King would begin another question to someone else. Alan Osmond would then have something further to say on it, not knowing the focus had moved to another guest. So Alan's comments were sometimes underneath another person's talking. I think it was just one of those things that happens in live TV with remote linkups. I thought Larry King was fair, going from guest to guest on most every question.

Wesley

Hi, Sarah,

I wasn't being literal or taking an exact quote from the show - sorry if I made it appear that way. But that's basically the impression you get from the celebrity MSers when they speak about MS. That's the overall impression they give the general public.

That's exactly what I mean.........your other comments about how bad it REALLY was is exactly what I'd like to hear someone on TV tell the audience.

I'd LOVE to be able to REALLY describe it to the public.

My former neuro did a pretty good presentation for Berlex, actually, last May. I liked it because to me, it is geared toward informing the general public about MS, and is a little more focused toward the "devastating" aspects of it. (Although, I wouldn't necessarily recommend an MSer to listen to it, unless you are prepared, because he sounds a little "doom and gloom", BUT if the audience is non-MSers, it goes a long way toward letting them know that having MS isn't exactly all peaches and cream, either!)

If anybody wants to hear HIS "presentation" of MS (but listener beware), you can find it at: http://www.multiplesclerosis.com/admin/ ... &zoneid=22

It's the presentation called "The Myth of Mild MS" by Samuel F. Hunter, M.D., PhD.

(And to think I used to yell at him about how "harsh" he sounded when he talked to patients about MS. After last night's Larry King show, NOW I want to put Dr. Hunter on every television show there is! He'd get the general public fired up about MS!)

The question and answer portion at the very end of that presentation is a little less harsh when he answers questions, though.

Deb

I have been told" at least MS isn't painful". Yea right! I'd like to have one day that is pain free! (without taking a bunch of pain killers and making myself loopy) Does anybody else get the burns? They hurt! I'm going to watch Larry King tonight. I think Montel is a good advicate to have on our side. I've heard him say he has curled up in a ball from the pain(been there,done that). Visit his site.

You know what the feedback I've personally gotten from the general public about Montel and his presentation of MS? That he is too whiny........cries too much, which turns a lot of people off. (Hey, don't attack me, I didn't say it! )

Anyway, where is the advocate for MS who is in between the two extremes (the ones using sympathy as the motivator, and the ones using hardly any motivator at all by giving the impression that the disease is not all that terrible)? The MSer who is angry at having MS and wants to make it clear what fighting this disease is all about? You know?

Deb

EDIT: Take for example, the organization called "MAD" (Mothers against Drunk Driving). Pretty catchy, huh?

What Osmond said that caught my attention was: "I'm taking just pills right now. I used to take shots everyday."

I just assumed it was a reference to Amispro as he said he traveled to England for treatment. He did refer to Amispro (actually, he called it Daval, as someone else pointed out) in the past tense. "it worked, it did something positive for me" so it was not really clear whether he is taking it now or not. Maybe the pills he mentioned were something he takes for symptom relief.

Sorry for any confusion.

Hmmm,
Interesting discussion. If we could stand dispassionately back from MS, what would we have others know about it? My friends already look at me with veiled pity in their eyes. I am more than this disease, I would rather that my friends and acquaintances knew nothing about it. I know a five year old boy, he's the son of a friend of mine, he knows there is something wrong with me, that I can't walk properly, but he doesn't care. He, with a childs eyes, sees the person, not the illness. I'm happy with that.

Then again sometimes a friend will suggest something that makes me think 'if you knew one damn thing about MS you wouldn't even think of that!' Recently a friend suggested that we go ice skating!!!!!!!!

There is a case for raising awareness of our condition to increase the funding coming in for research, however the NMSS spent 35 million on research last year. I read the annual research summary, am I the only one who interpreted it as a politicians speech, i.e. big on rhetoric and very short on substance?

In short, would an increase in funding actually result in progress? IMHO probably not. There are too many entrenched opinions surrounding the condition. and are the NMSS the best people to handle that funding anyway...........?

As for Aimspro, I have now seen three independent reports from people who are currently taking the drug. All of them are 'It didn't really work for me but I have heard of it performing miracles for others.' I have yet to read unbiased reports from the 'others'.

Robin

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Do not go gentle into that good night. Rage, rage against the dying of the light.

No, you are not the only one. Am I the only one, though, who has contacted the NMSS and has remained in contact with them, "networked" enough with them professionally to be able to speak with them directly and provide comments and suggestions to their research department from an MSer's viewpoint? Am I the only one who just recently ASKED them directly how many times a researcher has to publish the same findings over and over and over again before they actually ACT on something? Am I the only one who is willing to contact the CEO of the NMSS, who in her acceptance speech said she wanted feedback from people affected by MS in order to know how to guide the NMSS for the future?

And are you the only one who complains about things, but also (like the researchers) acts on nothing in order to attempt to affect change in the "system"? Remember, the NMSS exists solely because and for the benefit of MSers, not researchers. The NMSS knows that, but if they get no feedback or suggestions from the people, then they have no choice but to virtually assume they must be doing fine on our behalf.



Yes. Along with our suggestions for its use.

It's easy to sit back, all cuddled up in our homes rarely leaving, and talk. It's another to take action.



Who else? If you have a better idea, then present it, show how it is workable, and more importantly, then ACT on it.



Although I have already answered this one in previous posts, and this may sound trite, but to summarize all that I said before, present to the public how MS REALLY affects our lives........DROP the "brave front" we all put on in order to avoid emotions like embarrassment, shame, pity, etc. In other words, tell 'em like it is! And it sucks!

If you are "more than the disease", then open up, show yourself, and prove it.

Deb

You know, that does pose a question for me to ask others on this Board.

Who else, besides me, DOES have a relationship directly with the NMSS?

Deb

I have the highest hopes for Aimspro, but the Optic Neuritis trial is coming up on being two months overdue. If the anecdotal reports of administering it and seeing immediate improvement in eyesight are true, this data could be fantastic! Or, we might learn that this is all PR and that when they crunch the numbers, they don't differ markedly from CRABs.

I am very eager to see, and wish they would release some data!

I can't help but wonder if the "pills" Alan was referring to could have been LDN or minocycline. I did not see the show, and must admit that by reading the transcript, it does appear that Alan was cut short in his answers. However, it sound as if those of you who did see the show live agree that it was just a difficult situation with the delays.

He does have a web site with Daval info on it, for those of you who are interested.

www.osmondms.com

I have only one comment regarding the NMSS. A few of us LDNer's did a bit of an experiment a while back, each of us writing to them requesting that LDN be looked into as a fully trialed treatment for MS. We all received a form letter back with the exact same wording except they did manage to change our names. A little disheartening, to say the least. I'll take Michael Moore on my side any day over the NMSS.

Take care!

Kim

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Kim R.

Hi, Kim!

Quick question. Did you also provide the NMSS with at least some scientific proof, research, or fairly reliable hypotheses as to how and why LDN might work for MS? Make some correlations as to the mechanism of action of the drug versus what little IS known about MS, and how LDN's mechanisms of action "should" prove to be helpful for MS?

I would hazard a guess (just a guess) that simply saying "test this because we want it tested" wouldn't be enough without some substantive material, or what I call "if/then" correlations.

Anyway, all I can say is that I did not get that response from them at all. But then "substantive material" tends to be my middle name.

Hey, get some substantive material together and give it another shot! Compare how LDN works with how it should help certain physiological processes that happen in MS, and there might be a different response from them. I don't know for sure, of course. I'm just guessing.

In any event, that's a bummer that you feel the response you received did not adequately appear to address your concerns. This is the very type of thing you should post on the other thread I started, as a matter of fact! Provide your comments and suggestions to the NMSS on that thread, too. That's the type of feedback I'm asking for.

Deb

EDIT: Oh, the other problem, too, is that the NMSS does not "provide" the researchers themselves.........they provide the funding to the researcher(s) who applies for it.

SECOND EDIT: Hey, Kim! 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!

Hi, Deb. I can guarantee you that my letter to the NMSS had all the information they could possibly need, along with my son's MS story, so I approached it from the heart and from the mind. Someone actually posted their reply to us on another message board, if you're interested in reading it, let me know and I will try to look it up for you and provide you with the link!

How are you? I listened to Dr. Hunter's webcast yesterday after seeing your post about it, just out of curiosity. Refresh my memory. Why did you leave him? Yes, it was a bit doom and gloom, but basically, he made some really good points. Hope you are doing well!

Kim

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Kim R.

Hi, Kim!

I'm doing great!

Why did I leave Dr. Hunter? Uh..........that's hard to explain really. It was a combination of highly personal reasons (nothing to do medically) which I won't get into (my fault, really anyway) AND I.........uh........sort of got mad at him (and told him so), basically because he had me do the research on the drug desipramine in the FIRST place, said my research was good, saw and measured my recovery, but then said basically nobody would "believe us", and he couldn't prove it (simply because he didn't think it would work in the first place, so he wouldn't listen to me about proper monitoring of me BEFORE I started the drug, etc.) and then he found out it DID work like I TOLD him I suspected it might! (Man, was I mad!) But he agreed that a research study should be done on it, but he didn't have the funds, blah blah blah. I think he figured we'd be ridiculed, etc.

Anyway, we argued. Like two kids..........in the hallway of his office, no less. If you were to ask HIM? He'd say I'm "difficult"..........and I say HE'S difficult! Anyway, the argument was 50/50. So...bottom line? We fired each other! In the heat of an argument! Actually, it's hilarious now.

His chickening out - he'll kill me for saying that publicly, but that's basically what he did (when he knew the research was solid) on following through with attempting to get a research study started, only made me MORE determined. I said "You watch me go, Sam!"

And I was right. The NMSS did NOT scoff at my research.

Anyway, let's just say Dr. Sam Hunter is not totally out of the picture yet. Not if I have my say at all (because he's a brilliant MS researcher).

But, that's all I can say.

Other than our personality conflicts? Sam Hunter is one of the best MS researchers there is. And he's brilliant. You know me, I've done research on the individual high profile MS researchers, too. It's hard to beat Sam's experience, knowledge, etc., as much as I hate to admit it.

Deb

EDIT: Oh! And yes! Show me or direct me to where I can see the letter you got from the NMSS.

SECOND EDIT: And referring to Dr. Hunter, don't ask me why, but all his years at Vanderbilt (working with Dr. Sriram and Dr. Moses) has been deleted from his curriculum vitae (in case anyone "looks him up"). Anyway, he's worked with them, too, along with all his years at the Mayo with Dr. Rodriguez and Dr. Lucchinetti. He's been around, hasn't he? He also did research with Dr. David Hafler, too, a while back. I'd call him a undiscovered diamond in the rough.........literally! hahahahahaha...........