LDN and primary progressive MS

A board to discuss Low Dose Naltrexone (LDN) as a treatment for Multiple Sclerosis

LDN and primary progressive MS

Postby NINOU » Tue Mar 11, 2008 2:10 pm

Hello everybody !
I'm living in France and I have a primary progressive form of MS.
I would to know if anyboby on this forum has used LDN with a progressive MS.
It's very difficult to get a such information on the french forum.
I already have tried all treatments like betaferon, endoxan and mitoxantrone.
Doctors said me there is nothingelse to try. I think that's wrong and maybe LDN is one good chance.
I'w waiting for yours comments
And sorry for the faults ....
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Postby JoyceF » Tue Mar 11, 2008 2:14 pm

I've been taking LDN for over 5 years myself. I remember someone saying that Dr. Bihari, the discoverer of LDN, said that it doesn't matter which type of MS you have. That it should work on any type. I say try and get it and as quick as you can. It may just be the best thing you can do for yourself. Good luck to you.
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Postby DIM » Tue Mar 11, 2008 2:24 pm

Allo Ninou!
As Joyce said Dr Bihari suggests LDN for every type of MS and obviously the sooner you'll start it the better the results regarding it's progression.
You should also change to BBD, follow a nutrition therapy etc.
Have a look at http://www.ms-diet.org, www.ldnresearchtrust.org and you will find much more about what is good and bad for MS while on LDN.
In my humble opinion start with 1.5 mg for some days and gradually go to 4.5 mg cause many peolpe experiences introductory problems as my wife did.
Good luck.
Jim (or Demetre if you prefer it :wink: )
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LDN & PPMS

Postby Andy » Mon Mar 17, 2008 3:05 am

Hi Ninou, I also have PPMS dx in 1995 and found out about LDN and have been on 3mg fo about 4 years now and have no intension of stopping, although I have progressed I feel that the LDN has slowed the progression down. There is not alot of alternative out there so if I was you I would go for it.....
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Postby RuSmolikova » Mon Mar 17, 2008 4:53 am

Italian clinical trial of LDN and PP-MS:

http://www.unitedspinal.org/publication ... dn-for-ms/

More details will be published in the mid of April in Chicago (at the 60th annual conference of AAN.
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Postby pegs » Tue Mar 25, 2008 2:44 pm

Reading the book "up the Creek with a Paddle" the author quotes Dr. Bihari as saying 85% of his 4,000 some patients (since 1988 and onward)respond to ldn favorably with a daily dose taken between 9pm and 3am..of 3.5mg and the other 15% with 4.5mg. He stated that all his patients had the progression of ms halt....some regained what they lost if it hadn't been years of disablity prior. I just started ldn 4 days ago...looking for any and all input...I have no reaction to it as stated the possible bad dreams and poor sleep for the first 2 weeks.
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Multicenter Clinical Trials of LDN for MS

Postby NINOU » Sun Mar 30, 2008 1:26 am

Thanks a lot.
do you the date of this article and studies ?
Mid April 2008 ?




RuSmolikova wrote:Italian clinical trial of LDN and PP-MS:

http://www.unitedspinal.org/publication ... dn-for-ms/

More details will be published in the mid of April in Chicago (at the 60th annual conference of AAN.
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Postby RuSmolikova » Sun Mar 30, 2008 1:22 pm

Dr. Maira Gironi and colleagues of Milan, Italy have been invited to announce the results of their recently completed pilot study to the American Academy of Neurology in April in Chicago, that will be held on April 12–19, 2008 (see: http://www.aan.com/go/am). The six-month, multi-center trial was carried out in 40 patients with primary progressive multiple sclerosis. Safety and efficacy of LDN on spasticity, pain and fatigue were the major outcome measures of the study.
I am also looking forward to another interesting source of new information (October 2008):
http://www.lowdosenaltrexone.org/conf2008.htm
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Postby Skyglider » Sun Aug 23, 2009 10:27 pm

I am new to this site and very much interested in what all of you have said. My son, a senior in college was diagnosed with MS in his junior year. Therefore, I have been searching for anything that might help him. He was on Avonex, and his last MRI showed further deterioration. It really has not been helping him at all, just making him sick. We have been to the Cleveland Clinic; we have petitioned doctors in Chicago to accept him for the stem cell replacement clinical trial being conducted at Northwestern University Medical School, all to no avail. Of all the treatments, I have researched, and I have researched many, LDN is the only one that gives me hope. We have an appointment on 8/31/2009 for the prescription. I have faith that it will work for my son. I have to have faith. It is all I have left. I wish all of you WELL, and I will keep you informed.
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Postby LR1234 » Mon Aug 24, 2009 2:14 am

LDN, antibiotics (work for some) always worth doing the best bet diet as well.
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