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Multiple Sclerosis Blog

By Julie Stachowiak, Ph.D., About.com Guide to Multiple Sclerosis

Julie's Low Dose Naltrexone Journal: Preparation

Tuesday April 21, 2009
Let me start by saying that I don't really endorse conducting a clinical trial with a study group of one (myself). I’m a scientist - an epidemiologist - so I love data and scientific evidence in the form of big, rigorous studies. However, we are lacking that kind of research for LDN, in a bad way.

I’m also a person with multiple sclerosis that is sick (really, really sick) of some of these MS symptoms. After years of kind of monitoring what is happening with LDN (mostly through stories on the Internet, a few articles in MS-specific publications and a couple of presentations at conferences), I’ve decided to try LDN and blog my results.

Please remember (I will keep reminding you), that “studies” with an enrollment of one person are actually “anecdotes,” so do not take anything I say as evidence of anything except my experiences with this therapy. You may or may not have similar results. I’m not endorsing anything, just telling my story of what happened to me.

To fill you in about me, here are the basics: Diagnosed with relapsing-remitting MS in 2004. Started Copaxone June 2006 and am still on it (although Copaxone is not contraindicated for use with naltrexone - unlike the interferons - there could still be some sort of interaction, as pointed out by one astute reader; therefore, mine might be a different experience than someone only using LDN). A couple of bad relapses, none since starting Copaxone, but worsening, horrible, awful, brain-numbing MS-related fatigue, which is driving me to do something.

I got the prescription for LDN from my neuro at the end of last month. I dragged myself in there, practically weeping from frustration about my fatigue and related cognitive issues. I was ready to go back on Provigil, but (as he was standing up to go) asked, “Would you still think it was stupid for me to try LDN?” (He had turned me down two years ago.) To my surprise, he whipped out his prescription pad, wrote a script and we traded - I handed the paper with “Provigil” written on it back to him in exchange for one that read, “Low Dose Naltrexone - 3 mg.”

After taking the prescription to my local drugstore (mostly to see the reaction of the pharmacists) and getting it handed back to me (I was not disappointed - raised eyebrows, whispering amongst themselves, and a brisk shake of the head), I tracked down a compounding pharmacy and ordered my drug. That will be the subject of another entry, as it turns out that there are some important considerations in getting your LDN and it is best to go to those who are familiar with using LDN for MS.

Read the full articles/blogs:

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Comments
April 22, 2009 at 12:57 am
(1) brady says:

well Doc Julie, have to say I’ve got some concern about your experiment with the LDN…will be paying close attention to your journey and doing further study.

June 3, 2009 at 6:54 pm
(2) Mike Hinchman says:

I am quite interested in the LDN as a person with long-term PPMS. What I haven’t seen yet are any posts from people who have been using LDN for longer than a month and a half. What gives, do these people not exist? Does LDN cause some kind of problem that’s not talked about?

It would be nice to not be so heat and fatigue bound, let me tell you. But I’d like to know about the folks who have been using this stuff for some time now. Hope this isn’t some kind of “Flowers for
Algernon” kind of thing where in late stage everything comes apart and we’re ready for the rest home. I’m certainly not.

Mike

June 3, 2009 at 8:53 pm
(3) Julie (Guide to MS) says:

Dear Mike –

Check out the comments attached to this blog specifically: Julie’s Low Dose Naltrexone Journal: Days 0 and 1. There are several people here who have been on it for a number of years. From looking at all the accounts that I have seen, it seems that the effects are sustained over a long period of time and improvement even continues (in those for whom it works, that is).

November 6, 2009 at 12:59 pm
(4) infillolosius says:

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If any of the above topics rings bell for you, its TIME for you to request us to find more about cheating spouse.

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