First the Basics: LDN 101

"LDN" (low dose naltrexone) is an "alternative" medication used with surprising success in treating immune disorders, both autoimmune and immune deficient. Taken orally at bedtime, LDN works by briefly blocking opiate receptors, thereby "tricking" the body into increasing endorphin production. Endorphins being a central part of the immune system, increasing their production has been shown to help correct immune defects.



I have news! Very encouraging news! 😀

I don't post here very often because there's usually nothing new to say re: MS and LDN.....but today I have some pretty good evidence that LDN doesn't just make you FEEL better (which is a good thing anyway), it actually WORKS to help stabilize the immune system.

But first a bit of background.....

In case you haven't read any of my earlier posts, I've been on nothing but LDN for my RRMS for over 13 years, and the only time I had a relapse in all that time was during a period when I actually WASN'T on LDN for about a week because of a faxing error between the doctor's office and the out-of-state compounding pharmacy: at the end of that week of no LDN, I got a wicked bad case of labyrithitis (technically I met the criteria for Meniere's Disease) that isn't too bad anymore but for which I still have to take promethazine daily or I get dizzy and nauseated just reading or watching TV....
But other than that, nothing new has happened to me at all during that time MS-wise (well, except I got older), and the symptoms I had in the beginning (memory issues, mild numbness on my left side, heat intolerance, clumsiness, mild swallowing difficulties, etc) didn't get any worse. Of course they didn't go away either, but I never expected them to. Actually, the numbness definitely DID improve quite lot.

I'd been diagnosed in 2003, and treatment-wise, I took Avonex for awhile and later Copaxone, and washed out rather dramatically on both. I literally couldn't afford anything else, and I stopped seeing a neurologist because the last neuro was pretty dogmatic about the need for every MS patient to "find a way" to take whatever was newest (and most obscenely expensive!), or else it meant I didn't care about my health. [Yeah, that was literally said to me!]

So when it seemed that conventional neurology had nothing much to offer, I decided I was done with neurologists for the foreseeable future....which turned out to be about 13 years....

My primary care doc (a freaking SAINT who was also my employer and BFF) prescribed the LDN for me, but in 2009 she retired and the neurotology-focused ENT I'd been seeing for the inner-ear issues took over the LDN prescription, which of course I appreciated a lot.

But last year, in January of 2016, I found out that the  ENT didn't take Medicare (my only insurance) anymore, plus he had some ideas I found pretty sketchy, so at that point things got tricky....where was I going to get my LDN? I was really worried. I had to pay out of pocket to see him that one last time, but at least he was nice enough to give me a whole year's worth of LDN refills, which he prescribed in 3 mg caps for me to take up to 4 of per day, so I could experiment with slightly higher doses (up to 12mg). That gave me 120 caps a month.

I had a third new primary care physician (PCP) because he first one changed his specialty and the second one retired, but she was squeamish about prescribing anything for symptoms that might be MS-related, and I'd asked her about something for nocturnal leg cramps, which of course anyone can get, but mine got worse after I got MS, so she insisted that I see a neuro.

She referred me to a neurologist who had terrifyingly bad online reviews and almost no good ones, so I passed on that bad movie without ever buying a ticket and just kept looking. Then that new PCP, who barely knew me and didn't want to prescribe for me, sent a letter stating she was moving away and that I had to get yet another new PCP, the 4th new one in 7 years. That was fine with me. I found a fourth new PCP, but that one also wanted me to be under the care of a neurologist, so I agreed but she referred me to the exact same lunatic! Apparently that clinic only knows of one neurologist to use for I passed again on that recommendation and kept trying to find a neurologist on my own who sounded open-minded. But I wasn't having much luck....lots of neurologists won't see people with MS at all; even the neurologist who diagnosed me doesn't see MS patients anymore. 

Anyway, as the year's worth of LDN refills was waning, I emailed my old ENT's office in desperation, asking if he knew of ANY doctors who prescribed LDN, preferably neurologists. I got no direct response but noticed that another 6 months of refills had been authorized, so that was super nice of him.

Eventually I DID find an Austin neurologist who had posted some particularly encouraging, open-minded-sounding things online, and from what I saw and read, he seemed reasonable and nice, so I made an appointment and almost got my hopes up. It took months to get in to see him but I finally met him last week. 

As I waited in his reception room, I began to worry; was I going to be judged for NOT having been under a neurologist's care for all those years? I felt like I was showing up for a class I'd been cutting all semester; I hadn't felt that was since I cut about half of my 8:00am Oriental Lit classes in 1970....
(Not really; I probably got a B-)

Well, not only was he a VERY "reasonable", open-minded neurologist and completely non-judgmental, he actually knew and loved my saintly old primary care doctor (that BFF who'd moved away), AND he already prescribed LDN for lots of people!

I was so happy and excited to learn that I had a source for my LDN and a wonderful new neurologist that I completely spaced out asking him for something that might help my leg cramps! Oh well....that'll wait. awesome new neurologist and I discussed my history and symptoms, and he suggested that we get a new MRI of my brain. I hadn't had one since 2005 because I wouldn't have been able to take any different medication no matter what it showed so why bother? He didn't insist at all, just kinda wanted to get a baseline, plus he said he hoped it might show only relatively minimal changes, which would support the use of LDN. So I agreed and it was scheduled; my part only cost $200.

Well, I had the MRI yesterday and the nurse just called with the results. The MRI showed....(are you ready for this?)....... only the most MINIMAL CHANGES....over all those years! I guess on some level I'd been a little worried that, despite the fact that my MS had always seemed  pretty stable to me, maybe my MRI would show a tiny shrunken brain full of spots and scars. See, I was already pretty well disabled before I ever got MS, due to a spinal  injury, and that problem HAS worsened and makes life difficult and painful, but my MS....not so much really. Same challenges it presented in 2003. 
To be fair, I know we can't know for certain what would have happened to me if I'd been on something else, or if I'd been on nothing, because MS is so unpredictable. But statistically it looks very probable that at least in my case, LDN FREAKING WORKS!

I know that when I was diagnosed, I really didn't expect to still be walking at this point at all, since I already used a walker before I ever got MS. 

I knew I was doing better than I'd expected, and now I have an MRI that solidly backs up my perception. I am so happy and so grateful, I just had to share it with you. 

Now it's possible that maybe it is important to be on some of the conventional therapies at first, during the inflammatory phase of RRMS (or maybe not), but later, during what's expected to be the degenerative phase, those meds may not do much except waste a staggering amount of money. Anyway, LDN has been right for me, and I'm SO relieved that I no longer have to worry about how to get it. Maybe a lot of other neurologists have become fans of LDN too in the last decade when I wasn't looking; I sure hope so!

I guess that's it for now. As always, I wish you all the best.


I know the nervous walking... said...

Thanks. This gives me hope.

GG Brewer said...

Does LDN help with dealing with the heat or do you still get flare ups in the heat? I love warm weather but here in PA it gets humid in the summer and just dx today with MS and I am scared if summer now, but also cant take the cold!!