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Old 11-18-2006, 11:02 AM
euphonia euphonia is offline
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Join Date: Sep 2006
Location: dx'd MS & HNPP 7/03
Posts: 37
15 yr Member
euphonia euphonia is offline
Junior Member
 
Join Date: Sep 2006
Location: dx'd MS & HNPP 7/03
Posts: 37
15 yr Member
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Quote:
Originally Posted by Harry Z View Post
I keep on asking the question as to why a researcher would be testing a drug like LDN, that's been out in the market for a couple of decades, on that poor EAE mouse??!! We know that that EAE is not the same as human MS and there aren't any safety issues with naltrexone (used at 30 x the dosage with addicts) so what does Zagon hope to learn? Was this something that the NMSS insisted on in order to get this tiny grant?

It seems that going into human trials for a medication that thousands of MS patients are already using with very few problems is the path to go.

Harry

I agree with Harry here.

But...I've never thought that the usual type of clinical trials will prove LDN's effectiveness beyond a doubt to anyone anyway. I mean, people are still arguing about the risks vs. benefits of the CRAB meds after a gazillion dollars worth of clinical studies. Even Mayo has doubts that the benefits are worth the risks and expense for early, mild MS patients.

I've always been skeptical about the statistical evaluation of a disease that both relapses and remits on its own, both with and without drug treatment, of patients who cannot be positively diagnosed with it, and no one quite knows what it is anyway.

So, I'm not counting on these current studies, which appear to be the beginning of about 20 years' worth of piddly little fake MS mouse trials, to convince my doctors to finally prescribe LDN for me.

When I took LDN, I found the improvements subtle, gradual, and very difficult to measure with any statistical certainty. I only know that lots of stuff felt better.

My brilliant idea has always been for some enterprising entrepreneur to recognize the potential bucks in marketing LDN as a mild supplement type of thing. They should do some wide open investigative trials on a wide variety of humans to identify exactly what effects LDN has on people, sick or not.

What easily measurable symptom does LDN help the most? Fatigue? Brain fog? Mood? Bladder problems? Heat sensitivity? For me, it worked for them all. Pick the one it does best, get it approved for that symptom, market it to the general public, and it will be available to us all, just like other inexpensive supplements.

If LDN becomes more readily available, the effects on MS progression -- if indeed there are some -- will become obvious enough to warrant a real trial.

The situation now is that, even if they finally come up with a few tiny trials that show promise, there's no way LDN will ever be proven to the extent of the big money meds and allowed to compete as an "MS med" against their marketing forces.

I personally didn't notice that LDN had any effect on my MS progression either good or bad, although I also think that progression is nigh onto impossible to measure anyway. But I do think LDN at least has the potential to save us from taking so many symptom meds.

My other idea is to convince our doctors to try a little LDN for awhile so they can see how harmless it is and feel a bit of the benefits for themselves. Hahahahaha...
__________________
Susan
I got an "instant" dx of both MS & HNPP in July, 2003, but had likely had MS for at least 30 years by then. I've never taken any prescription meds for either MS or MS symptoms (except 1 yr on LDN).
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