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.


Update and Cannabis

Just an update, although there's really not a lot to report. In a nutshell, I'm about the same. Just older (62) and tireder. 
My pal Cindy sent this card for my last birthday; it still cracks me up!
I was diagnosed with MS in 2003, ten years ago this summer. I still don't have progressive MS, and am not much worse than I was 10 years ago. I developed chronic labyrinthitis during a period when I wasn't on LDN; I had been on it but ran out and couldn't get it refilled due to a fax problem at my doctor's office, and that was the first new symptom that came up since diagnosis.
What's next?
I wouldn't try to guess what to expect in the future, but I assumed MS would have me more screwed up by now. I mean, I never really thought forward about potential new disabilities, but if I had, I would have expected a good bit more drama than I've dealt with so far. I'm really not doing too badly at all. If my spine wasn't collapsed like a freaking train wreck, I'd be WAY closer to fine. As it is, I'm hanging in there, still enjoying my life but in a mild kinda way, and don't really think that much about MS.

I have the same general MS symptoms I've had for years; memory problems (including an almost total inability to multi-task), difficulty walking distances without support, chronic (but now very mild) labyrithitis, and nocturnal leg cramps, the latter of which might or might not be from MS. 

I take K+ and Magnesium for the leg cramps and sometimes a common ancient herbal remedy and I do fine, at least, as long as my lower legs don't get too cool; a heating pad or hot water bottle on cold nights does the trick. I have really bad insomnia anyway, so controlling the leg craps and spasms has been essential.

Treatment-wise, I'm still on LDN and nothing else just for MS, still getting it from The Compounder Pharmacy in Aurora Illinois. I take a few OTC  things which I'm  now getting from for MS symptoms like urinary retention; I've been taking 2 capsules of D-mannose twice a day for  a few years now, at the suggestions of both my dear old Family Doc as well as a urologist I consulted once. D-mannose prevents urinary tract infections- it works perfectly for me.

I also take one 25mg promethazine tablet, a cheap generic prescription item, every morning for nausea, which comes with my chronic labyrinthitis.  And that helpful herb, when I'm lucky enough to find some.

By the way, I'm not recommending all this stuff, I'm just telling you what I'm currently taking. 
My dizziness and nausea are very minor compared to the acute stage, but I do get terribly motion sick in anything that moves. I can't even ride in a scooter in a grocery store because looking at stuff on shelves as I move long makes me sick, quick! But that goes back to childhood for me. 

To be clear, some of my mobility issues are due to a spinal injury that has nothing to do with MS; my back problems predate the MS by years; I already had a walker and a small collection of canes before my first MS symptom. And some of the symptoms overlap, like numbness in the legs and weakness; severe multilevel spinal stenosis had already caused that so I don't know if MS is adding to it or not involved at all. 
MS sucks, but other things, like spinal stenosis, suck pretty hard too.
 Almost 15 years after the initial injury and my spine isn't any better, so naturally I have some issues getting around. But the MS does cause me to walk kinda funny on top of the spinal stenosis neuropathies; my back injury prevents my from straightening up fully when standing, but MS makes me walk funny. Slightly. I don't know how else to explain it
Not Ministry-of-Silly-Walks funny, but my gait definitely isn't normal anymore.

However, I'm still walking, just not very far because of increasing back pain and numbness when I stand, and I don't walk unaided except around the house. 

MS makes it more likely I'll stumble, and my inner ear problems make it less likely I'll be able to recover my balance in time to prevent a fall, so I did fall twice this past year. I'm old enough that falling down is kind of a big deal. In fact, I'm still sore from falling last March, a solid year ago; I tripped over my own feet and landed on my side with my arm extended, so basically I landed on my armpit, and managed to hurt both shoulders. Oh well, live and learn. I pitched out the ill-fitting slippers I was wearing that contributed to my second fall and I just move more carefully. 

To that end, I use my walker a lot more. It's a 3-wheeled walker with a big pouch and a basket. I've had it since 1999. I can cruise around the larger expanses in my house pretty easily using the walker; I feel safer and move faster and more efficiently with it, even though I don't need it for short distances. It's just easier with it, as long as there's room for it to pass. It has lovely big tires that can take bumps and uneven surfaces really smoothly and safely.

So far I can still manage to walk through a grocery store or Home Depot if I use the cart like a walker; as I walk, I'm leaning heavily on my forearms on the cart handle. I have to move through the store pretty quickly, to reduce the amount of time I'm upright and therefore the amount of back pain. Unfortunately, I can't use a scooter in a store because looking at merchandise on the shelves while moving forward makes me very motion sick; but that's not just an MS thing;  I've been prone to motion sickness all my life.
Cannabis as illustrated in Köhler's Medicinal Plants book [1897], courtesy Wikipedia.
Cannabis also helps many of us with MS as well as people with chronic pain symptoms, by reducing pain, stiffness and cramps, and taking the edge off dizziness and nausea. 

It doesn't always help everyone, but in general, marijuana can help you sleep, it can help you relax, it can sometimes help you focus; marijuana can help so many things but again, it doesn't effect everyone the same way. It can make some people temporarily but miserably paranoid, it definitely messes with your short-term memory, and absolutely should NOT be used before driving because it can impair judgment.  
  Unfortunately, I don't live in a State with legal medical marijuana and can't possibly afford to relocate to a place that does. I am stuck here in dumbass red Texas, where there will probably NEVER be approval of medical marijuana! Heck, we're lucky to get to just walk around in public without a special permit here. 

Sorry to vent, but it's just so frustrating. I'm expected to either just suffer or be a criminal, a perfectly ridiculous position for a nice, peaceful 62-year-old disabled lady to be in. I don't want to be a criminal; I just want to be able to buy and take my freaking medicine without spending a fortune and without risking prison!

Doctors used to prescribe this all the time
The fact is, cannabis has been used legitimately as medicine for over 2,700 years; it only hasn't been considered medicine for about the last 75, thanks largely to competing financial interests, NOT health concerns. [Google "William Randolph Hearst and marijuana prohibition" and you'll get a perspective on why it was prohibited in the first place.]  

Fortunately, some states are moving back toward a more sane approach to marijuana use, but, not surprisingly, NOT Texas.  Heck, Texas is moving backwards so fast we'll soon be required to teach an alternative to the "theory" of a heliocentric Universe...
From my 9th great-grandfather, Sir Thomas Digges' book, "Sonne" in the middle, see?

So what specifically is pot supposed to do for MS, medically? Well, for me it has eased pain and spasticity and has helped greatly with depression, anxiety, and insomnia. The major downside is financial, because the prohibition makes it very hard to get and silly expensive. 

That's about it, enough redundant rambling. If you don't see new posts for awhile, assume I'm status quo :o)


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flora68 said...

Thank you VERY much for your encouraging words:o). Take care~


Dave said...

I agree with what you say about cannabis. I'm in the UK so cannot obtain medical cannabis legally. I have spasms and stiffness in my right leg and a tremor in my hand. I wish I could try cannabis for these symptoms (of ms). Instead I'm offered baclofen which boasts side effects of muscle weakness & dizziness. As if I want this complication too! Sooo frustrated!!! Jill

Unknown said...

Thanks for all the info you provided. I've been an MS patient since 2007. I've been on low dose Naltrexone for 4 wks now. And been having extreme rigid muscle spasms. Wondering if I should continue with this medication or stop.
What are your thoughts? Any feed back greatly appreciated. I really don't have any other issues with LDN just the major rigid spasams. Does thins go away over time it not? Like I said deciding whether to stop this drug or continue.