I'm sorry I've neglected you. It finally occurred to me that those of you who have followed this little blog might have assumed, since I hadn't posted in over 2 years (!), that my MS must have gotten so bad that I couldn't post anymore.
NOT AT ALL. Far from it. I'm pushing 70 and my MS is still VERY stable, with no relapses at all ever since I got on LDN. I never developed any new MS symptoms and the ones I had in the beginning never got any worse. I've been REALLY lucky. My neurologist said that the disease courses of all of his patients who take LDN for their MS are unusually stable.
The only change I can think of that's relevant to all this is that last year I asked my doctor if I could up my dosage of LDN, from 9 mg to 12, and he was fine with it; LDN helps me so much with pain. I have a seriously bad back, having lost 4 inches in height due to severe disc disease, and can't usually take anything but acetaminophen for it. It's hard to endure but LDN helps. Plus I had a very effective lumbar epidural steroid injection in January and I'll probably have another one in a few months.
And in terms of meds and pain, etc., recently my very enlightened family doctor put me on medical cannabis, specifically a one-to-one CBD:THC tincture. I use 1 mg daily, sublingually. MS is a qualifying condition in almost EVERY state that offers ANY medical marijuana, and it helped SO MUCH with muscle spasms! I was able to get off of a pharmaceutical anti-spasmodic (Baclofen) that was really harmful to my renal functions. (I have severe kidney disease.) I hadn't been using any other form of cannabis for months, which is another long story I won't digress to tell today, but it's wonderful having a clean, LEGAL source of cannabis that really helps me. My neurologist was enthusiastic about my trying it too.
Last summer I decided to put myself on a diet and lost almost 60 pounds, but then by winter the weight loss just stopped, which wasn't cool because I needed (need) to lose almost that much more. But I had also severely re-injured my spine during that summer and I was in so much pain I was just losing it. I asked my family doc for an MRI of my lumbar spine, which hadn't been imaged in 14 years, and he obliged. My urologist had also ordered a scan from the same place, a renal ultrasound, and both scans picked up something unexpected; cancer.
Turns out that although my spine was a regular train wreck, we weren't going to be dealing with that until we dealt with a tumor in my kidney. I even had to get off of LDN for awhile, which was scary but it worked out OK. It was just for a couple of weeks when I underwent a nephrectomy, which is removal of a kidney. Post-op pain necessitated my being on opiates for awhile and there's obviously no point taking an opiate and an opiate blocker.
Now I know a lot of you deal with this all the time, but this was the first time I'd ever needed to juggle opiates and LDN, because being able to tolerate opiates at all is a brand new thing for me. They'd always made me WAY too sick to be worth taking, but after the abdominal surgery in February I needed something so I tried what was offered in post-op, which was a Percocet, and it worked GREAT without making me sick at all. What a relief! I only had to take it for a few days, then switched to Tramadol (a milder opiate) for a few more days, and that was it, I was back on just Tylenol. Still am. But it's good to know I can take opiates if I have to again.
Anyway, I'd been worried that being off of LDN even temporarily might lead to a relapse, but it didn't.
Something weird DID happen, though, something partly neurological, but it has nothing to do with MS or LDN.
As of about January, before the surgery, I've been dealing with a new, as yet undiagnosed disease involving neuropathy. No, it's NOT the MS. It's something else. This particular neuropathy manifests itself as a sudden, intense burning pain in some random spot that lasts only a few seconds but which sometimes leaves permanent numbness. It feels like a scorpion sting except that scorpion stings keep hurting for hours whereas this neuropathic pain is always mercifully brief, except this one time.....it was in May. I felt that sudden burning, neuropathic pain (I thought), this time on my side, then I felt it again lower on that side, and then on my back at my waistline, all within about a minute. That weird pattern made me think it really might BE a scorpion stinging me under my clothes, so I started undressing and got stung on the hand as I was taking my shirt off! TWO scorpions dropped out of my clothes. That's how much this neuropathy feels like a 🦂 scorpion sting!
Oh, and around that time I also stopped sweating altogether; I mean, I can't sweat a drop, from ANYWHERE. That particular symptom is called 'anhidrosis', and I first noticed it in May. The neuropathy started in the winter, before the surgery, before the opiates, so the lack of LDN didn't cause any of it.
So it turns out that when you put the weird neuropathy together with the anhidrosis, it adds up to a 'dysautonomia', which is a condition in which the autonomic nervous system (ANS), or some part of it, doesn't work properly. This may affect the functioning of the heart, bladder, intestines, sweat glands, pupils, and blood vessels. Aside from not being able to sweat, my B/P and pulse have been REALLY low lately, to the extent that I actually might have to take medication to bring my blood pressure UP. There are different kinds of dysautomic diseases but they're all incurable and only some symptoms are treatable.
Anyway, I discussed this with my neuro at my semi-annual visit in July and he said that he knows exactly who he wants to refer me to for proper diagnosis, but that we might as well wait until COVID isn't such a big deal (meaning after we have a vaccine, so I'm guessing another year). I asked if it was because there's really not much to be done about whatever it is and he said "Yes", that pursuing a specific diagnosis would be "mostly academic". Also I got the impression that whatever it is might yield more depressing information, so why rush into it. Anyway, I guess I'll let you know what it is in a year or so. Whatever.
Oh yeah, and also in the Spring, as I was almost recovered from the nephrectomy, I suspected that on top of everything else I probably had a thyroid problem (symptoms: intense daytime sleepiness, feeling cold easily, constipation, hair loss, fingernails crumbling, etc), so I asked that my family doc run a thyroid panel and he did. Well, it turns out I have Hashimoto's Thyroiditis, which is an auto-immune disorder. Yeah, another one. My body's destroying my thyroid gland. Great. So I was put on supplemental thyroid and my levels are improving. But I'm still tired, balding, with crumbling nails and I'm cold all the time. In Texas.
I'm sorry, I'm rambled on too long again, so I'll tie this up.
So I have a lot of stuff wrong with me, but I'm deeply grateful that my MS is stable and eternally grateful for LDN. I'm navigating old age with a growing list of comorbidities but so are all my friends. I can't dwell on my own problems that much anyway because I'm so freaked out about what's happened to my country. But I won't digress into that either. 48 days until Election Day and I am SO voting! 🤞
Take care.
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