MS and Provigil: Julie’s Low Dose Naltrexone (LDN) Journal
By Julie Stachowiak, Ph.D., About.com Guide to Multiple Sclerosis
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:
- Low Dose Naltrexone as a Treatment for Multiple Sclerosis
- Julie’s Low Dose Naltrexone Journal: Days 0 and 1
So, Did you find a good compounding pharmacy in the Conroe area that knows how to compound this correctly? I called one in the Woodlands that says they do compound LDN- and i asked them for the name of the doctor. They gave me the name of a Wellness Group in the Woodlands. I called and they want thousands of $ and you have to go through many many tests….more of an holistic approach to your overall health…when all i really need is a new doc who will write script… i have called 17 neurologists so far, and no luck finding one who will prescribes LDN…
I have taken LDN for 2 years and quite to my surprise am significantly better for it. I have had MS since 1984- did the copaxone, rebif but was beyond relapse remitting when i started so they didnt do much good. I did like provigil, though, and wouldnt mind taking that again too.
I am convinced that LDN does “something”–not a ‘cure’ but certainly has improved my life…rarely use a cane anymore – and lots of my sensory symptoms are gone….if i get really tired, I feel like I have MS again, but I took LDN at my father’s insistence- he had read about it and I never expected it to do anything. But a few weeks into it i started being able to do alot of things I hadnt done in YEARS….walking without cane. Standing up easily…walking without touching walls…balance was better, vision was better and most of those weird sensory (belt, numbness, spasticity,to name a few ) were GREATLY diminished…
When I run out, as I just have….i tend to regress pretty quick…so in a mad dash to find a compliant doctor.
Moved here in February and my supply just ran out….
I am trying to navigate your blogs, but having a little trouble…hoping you are doing well and interested to hear your opinion after several months…I stick to 3mg..i tried 4.5 but was not noticing any benefit..just a lot more in the dream category. 3 is good..for me.
Good luck to you, and any direction you might be inclined as to where to compound and who best to try to get an appt with. would be most greatly appreciated.
thanks
elizaBeth