2.20.2017

8 Ways to Attack Secondary Progressive MS

On paper, I’ve got relapsing remitting MS. Whatever that means. After a series of unsuccessful treatments, it's looking more and more like SPMS is starting to take over. The distinction between RRMS and SPMS is up for debate, and that's for people way smarter than me to sort out, but one of the key practical differences is that there are a tonne of approved treatments for RRMS while secondary progressive MS treatment is still barely a thing. 

After blowing through 5 of the most aggressive disease modifying drugs available, I’ve run out of conventional medical options. But I can’t just sit back and do nothing, so here are the unconventional things I'm doing to deal with my (probably) SPMS as I wait for science to catch up. 

WARNING: this is not advice. This is a blog. Talk to your doctors. You don’t know me (and even if you do), I’m just some rando with a computer. Do your homework. 

Ketones

I love a trendy diet. Avocado toast and kimchi are so last year. Charcoal is the new bone broth and #buttercoffee is my latest obsesh. But regardless of whatever Gwyneth or Dr Oz might be slinging this week, I’ve been using diet and nutrition in earnest to influence my MS and my overall health for years. So, when I first learned about research into the ketogenic diet as treatment for MS and other neurological conditions, my interest was piqued. 

What it is: Some science-types are examining the brain-health potential and neuro-protective capacity of ketones. The brain uses ketones instead of glucose as an energy source when the body is low on carbs. Fun fact: Ketogenic diets have long been used in the treatment of epilepsy with great success. 

How it works: Kind of Atkins’y in that you can achieve ketosis with a high-fat/ample protein/low-carb régime. That doesn’t exactly work for me, because I don’t want to wrap my butter in bacon, and I like bread. So instead, 5 days a week I eat bread (and fruit, veg, fish, meat, popcorn and whatever the hell else I want), and 2 days a week I fast by dialing my caloric intake way back. Then I pee on a stick, and it tells me I’m making ketones, which are hopefully traveling up to my brain and fixing it.

Uhm, is that safe? Relax, mom. My doctors are following me. And I’m maintaining a healthy weight by breaking my weekly fasts with handfuls of triple crème brie. (Note: if you are underweight or have a history of eating disorders, this is not for you)

So…? I feel great on fasting days when I typically have a kefir smoothie, salad and homemade soup, lots of water and even coffee. It can feel like a bit of a detox.

Supplements

Speaking of pee, mine is super fancy. That’s because it’s loaded with supplements. I started seeing a naturopath who recommended the usual mega-doses of vitamin D, but also looked at my blood-work and saw areas that could use some cleaning up that might have nothing to do with MS. I'm looking for things to encourage myelin repair and nerve protection but I'm also interested in prevention because, let's face it, I've been effing with my immune system for years and, turns out, you can get more than one disease at a time. So, iron, B12, EGCG, some weird (but not magic) mushrooms, EFA’s, milk thistle and turmeric are all part of my daily routine.   

Biotin

Biotin is a supplement (B7) that gets its own category because it’s really expensive and you need a prescription and a compounding pharmacy to get it in the mega-doses that have shown encouraging results in improved disability scores for persons with progressive illness. Bonus: I don’t know what my myelin looks like, but I’ve been taking it for 10 weeks and my nails are hard and my hair is shiny. Like a pony. 

Food 

I get full on a mostly whole foods diet but I also believe in chips the pleasure of food and the importance of sharing meals with loved ones, so there isn’t really anything I would forbid myself to eat (except diet soda because, gross). I eat real, unprocessed food as much as possible, and mindful eating allows me to budget calories for wine. Because you’ve gotta detox to retox.

Move

Physio is hard. And let’s face it, hella boring. I’m not running on a trail, wind in my hair, listening to Beyoncé jams. I’m doing tiny, tedious ankle raises, and they are kicking my ass. It can be hard to stay motivated, so I treat physio like it’s my job. Connecting with a therapist who pushes me, helps. When I went from regular aerobic workouts to struggling up a few stairs, I flipped the bird to cardio. But my bossy therapist pushed me to keep trying. Reluctantly, I started with just 2 minutes a day on the elliptical. Now I’m up to 10. I regularly feel like an obvious tool sliding into the gym for a scant 10 minutes, but that’s 5 times what I was doing a month ago. And, when I realize that’s 10 more than a lot of able-bodied normals have done all year, I feel smug and self-satisfied. Research says our brains need this. The cardio, that is. Research is still out on the smugness.

Imagine

Elite athletes have been improving their performance with mental practice for years, and the idea that the same principles could be used to train MS brains to do things like walk faster, makes sense. Research thinks so too. Check it out. Quality mental practice through focused visualization can have the effect of activating areas of the brain that would be engaged if the task were actually being completed. My physiotherapist and I developed a script to coach me through day-dreams of walking quickly and correctly. Sounds boring, right? It is! But that seems to be the only downside, and a way better use of my imagination than freaking out about the impending zombie apocalypse. 

Think

I roll my eyes when people with uncomplicated bodies tell me to think positive as if that’s all I need. I do believe in the power of attitude, but I don’t want to hear it from someone else, and you don’t want to hear it from me. I’ll just say this: it’s not always possible, but when I am able to love what I have, that is when I’m happiest. 

Do (and Don’t)

Self-care for me, incorporates all of the wellness initiatives above, but also includes meaningful work like writing this blog, investing in relationships, filling my days with interesting projects and ample downtime. I treat Netflix and snuggles with the dog like it’s a written prescription.

Rx Netflix and naps. Repeat as necessary.

So, does any of this stuff work? I dunno. know. Stay tuned. In the mean time, what do you do when drugs don’t cut it?

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9 comments :

  1. I have reconciled to the fact that my doctors don't have a bloody clue to the treatment of MS. They prescribe medications in the hope that the new medicine will arrest the course of MS. And also make the pharma companies rich. When the new medicine doesn't work, they try out another one. Since I am the patient, I focus on enjoying what I have left - before MS takes it away. MS is about uncertainty. I never know when it will grow worse, so I should enjoy life while I can.
    There is always Monty Python, improv and sketch comedy.
    https://youtu.be/kE186w91YVU

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    1. It's complicated and there's no perfect treatment yet but there are some who are getting awesome results with the drugs that are out there.
      I totes agree that in the absence of actual medicine, laughter is the best. Monty Python and Kids in the Hall. Personally so happy to have Mantown here in the city.

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  2. Smoke pot! Haha jk! But I do know a few who swear by it. The CBD in pot is wht u want. I am more willing to give hemp oil a try, the no thc kind, the last thing I need is to try and function while high. I can't function properly when I'm sober! I also take high d3 dose and magnesium. I'm so confused with everything else.

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    1. Haha. It's a lot to sift through Amber, you have to do what's best for you.
      I know lots who benefit from pot and it's great that it's available to them. It's about to go legal here in Canada.

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  3. I too have a MS regimen. It includes water, vitamin D, Omega 3’s, diet, exercise, meditation, stress free living, and no prescription medication. I feed my head and body good stuff but I could always do better. I had pizza the other day. I do a lot to combat my disease. After taking Copaxone and Tecfidera both for about a year to no avail I’m really just interested in slowing down the progression. Unless of course, we find a way to go back to the way we were before disability set in. I’m going to have yet another MRI and maybe take Gilenya, under doctor’s supervision of course. I appreciate everybody’s comments. And thank you Tripping for having a blog. This stuff is actually part of the stuff I do to combat my disease. Thanks again, and be well.

    JE

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    1. Thanks for your comments JE. It's always nice to hear from you.
      I'm pretty sure the occasional 'za is good for your emotional well-being and therefore cancels out any negative possibilities. Sounds like you've got a good, balanced wellness plan. Thanks for checking in!

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  4. My doctor tells me I should drink a couple of glasses of wine each night. Oh, and did you know I go by Doctor, now?

    Great blog 😊

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  5. Ardra, Since I was diagnosed PPMS seemingly ages ago (1994) my neuro offered the injectable meds usually offered for RRMS but I declined. I made an attempt to do things my way, and believe me, doctors were a lot LESS savvy about autoimmunity back then. I did colonics, had fillings removed.. The good side was I learned Transcendental Meditation and Yoga, hooked back up with my chiropractor whom I've been seeing on and off for 20 years now, and was Macrobiotic for a bit. Now I eat probably a lot like you - including more animal protein. But I've given up on sacrifice, and I do like to eat with others - and I DO now eat bread! It feels as though my digestion works better when I simply eat good food and stop the constant fretting over just exactly what to eat.
    I'm going to investigate the things you mentioned - I've heard a lot about fasting and have never
    tried it!! So cool that you're employing this - hats off to you! xBarbara

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