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-   -   Check in for those on LDN? (https://www.neurotalk.org/multiple-sclerosis/1031-check-ldn.html)

wannabe 10-04-2006 12:46 AM

Found an interesting recent article on LDN in MS and autism. It doesn't go into any details about MS but it does mention it as helpful:

http://www.dailyevergreen.com/disp_s...?storyId=19110

"Naltrexone has shown to be most effective in controlling autism symptoms when taken in small doses. It also helps in other areas, such as stabilizing multiple sclerosis and controlling cancer growth. "

AGR_UK 10-04-2006 08:54 AM

and you Lady- hope you're keeping well and had a good summer - despite all the horrid heat! lol

liisa 10-07-2006 08:36 AM

LDN'er for 5 months now ( about 1 week now with Dr's rx...)

I have more energy, strength, better balance, not as much jerking, bladder issues improved, sleeping at night, use of my right arm again!!, less bone pain, less buzzing. A nice bonus is the dreams!!! :D

AGR_UK 10-07-2006 11:18 AM

you sound like a born again ms'er Liisa! lol Long may it last!!!

christine bauman 10-07-2006 02:19 PM

hELP
 
I asked my doctor for a script for this and his reply was no, they haven't done a trial and a small trial doesn't cost much. I have secondary progressive and wondered if anyone knew why a trial has never been done??

SallyC 10-07-2006 06:02 PM

Quote:

Originally Posted by christine bauman (Post 21997)
I asked my doctor for a script for this and his reply was no, they haven't done a trial and a small trial doesn't cost much. I have secondary progressive and wondered if anyone knew why a trial has never been done??

Hi Christine.:) First of all, your Doc is old fashioned and a wimp.;) Naltrexone, at low doses (LDN - 3 to 4.5mg) can do no harm, and with the many PWMS on the drug, and loving it, should be enough proof for your Doc to prescribe it for you.

Naltrexone has been FDA approved, at much higher doses (50 to 300mg for the control of drug addiction and alcoholism. It has not been in a lrge Dbl Blind Study for MS, because there is no money in it for Big Pharma, since naltrexone is already an approved drug and is now generic and cheap.

I did mention that there have been some small successful trials done, by interested Docs in the UK. I am only interested in bigger trial being done, because of doubting Docs like yours. As far as I'm concerned, we LDNers have done our own successful trial, and are here to tell about it.

Not scientific, but there you have it. Tell your Doc, that it does no harm and just may help you. That, along with the anticdotal evidence from us, should be all he/she needs to write a script. Unless he/she is one of those close minded Docs, who never thinks outside the box.

Good luck Christine and go to the LDN homepage and ask your Doc to do the same.

pals1107 10-08-2006 09:28 AM

10 months now on 4.5 LDN. Everything is less severe. Of course what my symptoms are from is still up in the air. What an improvement of the IBS though! It's like I don't have it anymore.
Pat

lady_express_44 10-08-2006 10:42 AM

A trial to prove that LDN is effective for slowing disease progression and/or reducing attacks would be EXTREMELY expensive, and take many years.

There is a lot of anecdotal evidence out there now about LDN, and more and more people are becoming convinced it's the best option we have. If our ongoing health is the primary concern, I wonder why not do a trial just to prove it's NOT working?

I suspect it's the bottom line that generally dictates where trial monies will be spent, i.e. how much money can be made off a drug?

The good news is that perhaps the NMSS is starting to help in this regard. They have apparently recently granted Dr. Zagon, a researcher who works with Dr. Jill Smith (who is a Crohn's/LDN trial researcher) a pilot grant to start working on LDN with MS.

I believe the thinking is still to test LDN on a single MS symptom (i.e. bladder), and if it proves effective for that, then any other improvements would just be a huge bonus.

Quite honestly, I don't hear of many doctors/neuros these days who are still refusing to rx, so long as the patient is informed and determined.

Like all drugs, I'm sure it works for some, and not so well for others, but it appears to be a safe and effective drug for many with MS.

Cherie

AGR_UK 10-08-2006 11:35 AM

Quote:

Originally Posted by christine bauman (Post 21997)
I asked my doctor for a script for this and his reply was no, they haven't done a trial and a small trial doesn't cost much. I have secondary progressive and wondered if anyone knew why a trial has never been done??


Christine, if you want to try LDN you can do so through sources other than your PCP. PM me and I'll give you the contact details to a doctor who WILL be glad to help on this front.

SallyC 10-08-2006 03:03 PM

Quote:

Originally Posted by AGR_UK (Post 22299)
Christine, if you want to try LDN you can do so through sources other than your PCP. PM me and I'll give you the contact details to a doctor who WILL be glad to help on this front.

Yes, my PCP will prescribe it now, but for the past 3.5 yrs, I've been getting my script from A Doc in Pennsylvania, who was recommended by the LDN site. Sometimes, when your, by the book, Neuros won't do it, your PCP will.

My Daughter, who has MS, gets her script from her PCP. She has refused from the beginning to do any of the shots...stubborn, takes after her Mom.:D :cool:


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