Will the last ms researcher turn out the lights

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

Why wait on the drug companies for a solution?

Postby SammyJo » Mon Apr 11, 2005 8:30 am

Anyone with MS should try Low Dose Naltrexone while they are waiting for the drug companies to get something out of their pipeline maybe in the next decade that actually works. Naltrexone is already FDA approved. At 4.5 mg there are no side effects. All you need is a prescription at $20 a month. Sorry, this one won't help your biotech portfolio, but it just might get you out of a wheelchair or off your cane like it did me.

A hypothesis by an MD/PhD has been published. The first clinical trial for MS is underway in Germany, the Dr is coming to NYC in June to the LDN conference to present his results. I will be on the users panel, and will report back to the boards on the conference.

I've been on it 14 months now. When I started I was getting approved for a motorized wheelchair, after a year on a cane and rapid deterioration into SPMS. Copaxone, Avonex and a year of chemo did nothing to help, MS worse and I lost 10 points of heart function. I've had no flares, no setbacks, no fatigue, no heat stress since I started LDN. Only steady progress at recovering lost muscles thru physical therapy. I can now walk 1/3 mile in 12 min, getting farther/faster every week, and my stride is nearing normal. On the go all day, very active volunteer for my local MS support group.

The survey of 267 LDN users I did reported a very low relapse rate 0f 0.2 or 1 in 5 yrs, and 76% found symptom improvement. Just finished another survey measuring change in Disability score -the average was getting out of a wheelchair and walking with a cane. I went from 7.0 back to 4.0 over the past year. Details at http://LDNers.org and you can see a picture of me doing my 1/3 mile thru the spring tulip fields.

I am telling you about this because it makes me sick to think of you suffering like I did for so long when there is such a simple solution that works for so many, that can put MS on hold, while we wait for the final cure.

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Postby Rita » Mon Apr 11, 2005 11:25 am

What about the black holes in the brain, are they dismissing with LDN too? For me this is the most important problem in MS.
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Re: Will the last ms researcher turn out the lights

Postby 1eye » Sat Oct 25, 2014 5:50 am

I think they do tell us it'll be cured in about 5 years. They tell us this every year. I was told this when I was diagnosed about 15 years ago. If people on TiMS are waiting for drug companies to find a cure, they had better stop waiting. There is a built-in economic disincentive for drug companies to find anything resembling a cure.

We will not be rescued by another Jonas Salk. The ebola crisis tells us that even when the future of the human race is at stake, drug companies will not move. They only move if there is something patentable, where they stand to gain 17 years of licensing, and insurance companies are required to give it to them.

They are addicted to addiction, which guarantees them their time-release opiate profits. The "MS" drugs are their favorite kind: the ones doctors can tell them are "for life". I was told that by a cardiologist about Lipitor! Drug pushers and doctors alike see heart-disease as another iron rice-bowl guarantee of income, for their lives, not yours. Your death will not sadden them: there are always more "MS" patients.

Having been an "MS" patient for this long has made me impatient. Having had my veins ballooned has made me not progress. So I am no longer desperate. My wife may be ;-) But I now know the stents will probably kill me before the heart disease or "MS" do.

Perhaps drug development needs to be the responsibility of the government. It would probably move many times faster than the addiction vendors. Leaving things to the pushers shows we are suckers for addiction to drugs, and that we trust doctors and drug pushers way too much. If you have seen "Dallas Buyers Club" you might see what I mean.

They even have us convinced they are working to benefit us, to the tune of 15 Billion dollars a year
in drugs specifically and only for "MS". You might say "MS" is the greatest hoax of all time.

And no, the last "MS" researcher will not turn the lights off. If things continue as they are, we will never meet any such individual.

BTW Amantadine, given to "MS" victims, is a very good anti-viral. It has kept me cold-free many seasons. Maybe it even helps with Ebola. You'll never know if you ask the drug pushers. It's out of patent.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Re: black holes

Postby 1eye » Sat Oct 25, 2014 7:13 am

Rita wrote:What about the black holes in the brain, are they dismissing with LDN too? For me this is the most important problem in MS.
Rita


As far as I know there is not even any proof or even common agreement that black holes are broken neurons. That is just the common conception, which with $5 might get you some Starbucks.

They could just as easily be the tracks of invading helminths.

I have seen mine, so I know they exist. They are not microscopic (neither are "MS" lesions or "Dawson's fingers"). They are macroscopic.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Re: Will the last ms researcher turn out the lights

Postby euphoniaa » Sat Oct 25, 2014 10:12 am

I think it would be helpful to point out to interested posters that this thread -- bumped & resurrected today -- is actually from April, 2005, 9-1/2 years ago. :smile:

Although old topics are often of interest, it's helpful to know that the discussions within them may be a bit stale...
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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