Fair warning: I’m writing this while exceptionally tired, with an insurmountable mountain of anxiety and fatigue. I apologize for any confusing language, wrecked grammar, emoji, or random segues in advance. This is likely incomplete and will be subject to edits later. Any updates or changes to my routine or experience, I’ll attempt to post here. I hope I clean this up later.
I need to take stock of what I’m taking, why, and hopefully cut back on this stupidly pricey adventure. I figured I’d share in case any of the referenced material could help others.
I would like to preface the most legitimate research in areas with regards to supplementation in MS are by and largely inconclusive. Data varies, contradicts other data, etc, and if I didn’t, we’d know otherwise, like with the data regarding Vitamin D. The only supplements I feel completely certain of being beneficial (at the very least in the short term), are D, Lion’s Mane and Neuro-Mag. I’m a mycophile… wait, does that mean what I think it means or does it mean the other?
Okay, we’re good. 🍄 *cough*Anyways…
I’m going to list these in an order that makes sense to me – supplements I’ve “noticed” the biggest “benefits” from. In case it needs to be stated: I am not a medical professional, none of my claims have been evaluated by a medical professional, I’m just a nerdy chick with cog fog and sleep deprivation on the internet and anything posted henceforth is 100% subjective.
Vitamin D 5000 UI & K2 MK-7
My D levels were a little high per my last labs, and I find that D supplements add to my anxiety. Technically I’ll be cutting D and K2 MK-7 that I take separately, and I’ll be adding a D3 + K2 combo, and I plan to take it on alternating days that I’m NOT taking Modafinil on. I also plan on making it a point to go outside more once the pandemic is over… so hopefully this doesn’t tank my D levels. Every one of my doctors wants me to take D, I think at this point we all know that MS = generally recommended D supplements.
The why… “Use of Vitamins and Dietary Supplements by Patients with Multiple Sclerosis“, a study looking at literally just a handful of supplements which basically states Vitamin D is the only supplement with evidence of benefit. MDLinx posted a link referencing that study that shows the list of supplements they looked at. Now the other…
The line in a specific study that made K2 compelling for me, “K2 could be relevant in preventing disease progression in Multiple Sclerosis”. The same study points out that K2 is atypically low in PwMS, and other sources such as Healthline, show that K2 is helpful to prevent arterial calcium deposits with it’s “central role in the metabolism of calcium” and that there is “substantial evidence from controlled studies” that K2 benefits bone health, and that it should be assumed it helps with dental health as well.
More research is needed for K2 benefits but… it doesn’t seem to have a substantial downside warranting not taking it.
Magnesium L-Threonate (Neuro-Mag)
I actually feel this one. If I run out and stop taking it my everything hurts and I sleep like trash and feel miserable and no, no no no this one lives here now. This is easily my favorite supplement and I don’t think I can do this without her. #things I never thought I would say about *magnesium* of all things. I need to update this later, as the only research I found was the abstract for “An antispasticity effect of threonine in multiple sclerosis“, but I can say emphatically that this is my experience.
Since starting Neuro-Mag a lot of my random pains (poking, stabbing, weird electric sensations and spasticity) have VASTLY improved. When I’ve stopped, they come back, when I start again, they go away. It’s been enough times I’m 100% convinced it’s not a coincidence.
The “other” supplement I “feel”. I almost feel as if mushroom supplements warrant a whole other post, I’ll consider that for the future. The TLDR is Lion’s Mane is neuro-protective, may remyelinate nerves and helps with nerve regeneration. “NGF (Nerve Growth Factor) maintains the neurons necessary for learning, memory, and attention.” There is no easy way to cite everything pertinent to Lion’s Mane here so I’ll link to an excellent but very LONG Reddit post: Lion’s Mane. Best supplements. How it works.
I take the Oriveda Lion’s Mane combo, alcohol AND hot water extract, two separate supplements. My current routine is the hot water extract sometime during the day before I eat, and the alcohol extract with food. Yes, this is an expensive route. YES, I believe it’s worth it.
As a budget alternative, I *did* like RealMushrooms, sold by RealMushrooms on Amazon. These are a 1:1 water extraction, not as beneficial as the alcohol extract for NGF, but does still have other benefits. The above-linked Reddit Bible is worth a read, if nothing else than the TL;DR at the start.
I take a reduced dose of this (2 instead of 3 capsules), mostly as a preventative measure as I’m at an age it’s appropriate. I take a highly bioavailable supplement with a lower dose of Magnesium as a result of the Neuro-Mag, trying to balance things out.
D-mannose & Probiotics
I used to have chronic UTIs spanning like 15 years, then I fixed it. Then I started Ocrevus, then I had two in about a month and a half after years of no UTIs. D-mannose is the sugar found in cranberry that helps prevent/ward of UTIs (ie the reason you chug sugar-free cranberry juice). So this is that, without the torture. It’s more effective as a preventative treatment than some antibiotics, it’s working for me, it’s cheap, I’m in.
Along with the UTI thing, I’ve always had digestive/feminine issues, and having a “women’s probiotic” (with Lactobacillus rhamnosus GR-1 and Lactobacillus reuteri RC-14 , specifically) works wonders. Especially while I’m on Ocrevus. Ugh. These two are my all-in-one fix the lady nethers while on Ocrevus solution.
Alpha Lipoic Acid & Acetyl L-Carnitine
Lipoic acid is “currently being studied as a potential neuroprotector for people with MS”. There’s a pretty long article over at Multiple Sclerosis News Today, with a ton of citations that supports all the MS-y reasons I take lipoic acid. Acetyl L-Carnitine was on the list of supplements my first neuro wanted me taking with the MS DX, for improving memory, energy, etc etc. Kind of similar creatures and I found a cheap combo supplement (Vitacost ALA & ALC HCI) that… I don’t know if I can say for sure it’s helping. I’m planning to look at this one again later once life normalizes and I can start getting to the gym. For the gym reasons.
I think this is one of the least-contestable supplements on this list, a ton of people swear by it.
OMS supplement of choice. Being completely honest this is the only OMS adaptation to my diet so far, and the rest is a 393-page work in progress. (I need to read the book.) I technically DID adopt the diet based on the website criteria for a short time, just before the pandemic, but I’m pretty sure we all know how the pandemic is going.
Findings include Jelinek’s research that flaxseed oil can reduce your relapse rate by up to 60%, can help prevent cognitive decline and immune dysfunction, as well as has the usual benefits from omega-3s supplementation otherwise.
Things I have taken and cut, or am cutting out:
Biotin/B-Complex/Hair, Skin & Nails/Collagen
I take this combo to manage my hair thinning from Ocrevus, nothing less nothing more. The research on the High-Dose Biotin Protocol (“It has been suggested that very high doses of biotin may be effective in MS by promoting myelin repair through activation of an enzyme involved in myelin synthesis and by enhancing energy production in demyelinated nerves.”) has been largely inconclusive and as I’m RRMS, perhaps not directly beneficial in the cited capacity?
Past that I have concerns as high levels of biotin may “lead to false results on lab tests”, notably with regards to troponin tests checking for heart damage. Also, biotin, when taken in larger doses can cause acne when the B5 levels aren’t balanced accordingly. It can also cause headaches (in my experience), and apparently “skin rashes, digestive upset, problems with insulin release and kidney problems“.
I have been asked me why the collagen with regards to MS: It’s for the possibility of “improved skin elasticity and appearance of the skin after taking collagen hydrolysate supplements for at least six weeks“.
While this doesn’t directly correlate to MS, ask me my theory about the havoc disease-modifying therapies, pulse steroids, Modafinil, stress (pandemic, politics**) and chronic sleep deprivation can have on possible premature aging… I’ll be switching this combo of many out for a single OTHER Hair, Skin & Nails vitamin combo (Life Extension), as it both works out to be cheaper and many fewer pills, much less biotin.
Pyrroloquinoline Quinone (PQQ)
(I take a blend w/Acetyl-L-Carnitine and CoQ10)
Thread from This Is MS lists most of the relevant studies I referenced and calls out that celery is a good food source of PQQ, where I personally find celery to be about the most uniquely disgusting edible thing on the face of the planet. PQQ looks very promising, it’s worth looking into. Claims of benefits include “mitochondrial biogenesis”, “energy-boosting” “improves cognitive performance”, “improves mood and mental health”, “improves sleep”, “increases wakefulness”. I’ll revisit this one later when there is more data.
My doctors advised I try rhodiola for stress, anxiety, fatigue, improved brain things, pretty much everything rhodiola is supposed to do. I found it to be sedating, which I hate. So I stopped. My issues with sleep have a range, feeling sleepy isn’t among the problems.
My first neurologist put me on taurine, I’ve been off nearly as long. There is evidence that taurine “helps oligodendrocytes to fully mature and activate the remyelination process of damaged nerve cells”. Per the studies coauthor Luke Lairson, “Remission of MS symptoms is dependent on the process of remyelination, so using taurine in combination with an existing MS drug and a future remyelination-inducing treatment may help patients by improving overall efficacy.”
Independently of MS, taurine is an amino acid, supposed to help with energy, metabolism, protecting your heart, muscles, against brain aging, does a bunch of other things, and taking it supplementally I felt bad. Dizzy, weak… otherwise intangibly not good. I think I read something about it reducing blood pressure, and I already have hypotension. Worth a revisit but I’m not worried about it right now.
N-Acetyl Cysteine (NAC)
Another neurologist’s pick, I don’t remember exactly why they suggested I take it, but it was another that made me dizzy, nauseous, gave me a perpetual headache, maybe messed with my hypotension situation. Supposed to help with cognition and attention for PwMS, slow brain deterioration.
Taken on an as-needed basis:
This is mostly on-hand for when I get a prednisone pulse. For the potassium reasons and I won’t eat bananas because see the UTI/lady problems section.
**Re: Politics mention; Regardless, any way you look at the current political climate, it’s stressful for everyone. I try to stay as far removed from this discussion as possible and it’s still stressful NOT taking a side. I can/will say I love and respect everyone, your thoughts and feelings are valid. Yeah you, whoever (if anyone, I’m not tracking analytics or anything, still pretty sure this is no one) is looking at this.
Finally, something I actually recommend to literally everyone, scientific validation be damned:
Mindfulness, or a more specific suggestion:
Mindfulness in Plain English by Bhante Henepola Gunaratana
This isn’t an affiliate link. I get nothing for you following this. I think more importantly than vitamins or supplements, especially with everything going on, the most valuable thing we could have is mental well being. Plus they tout pain relief (or at least extreme tolerance) which seems like a handy tool.
This book is specifically about the OG Buddhist Vipassana system of meditation, commonly known as “Mindfulness” in the West. This seemed to be the most accessible and well-regarded starting point, minus most of the current adaptations/modifications from Western culture. It’s weird and I’ve been uncomfortable but functionally it seems effective. Since the pandemic started and I’ve been isolating it’s been a help staying sane, and I think I’m gaining some clarity and acceptance for the effort.
Another link for MS supplements of note/interest with associated research: The top 15 supplements for natural MS Treatment, by Dr. Ronald Hoffman. References many I have listed here as well as several others.