by Dr Margaret Finlay BVMS (DVM) PhD.
Adventures in Nutrition
I had nearly 3 and a half years living with Multiple Sclerosis (MS) before my husband and I moved to Los Angeles at the end of October, 2015.
After my diagnosis in May 2012 (around the same time as Jack Osbourne [son of Sharon and Ozzy] was getting his MS diagnosis – ALL the cool kidz were finding out about their incurable, degenerative neurological diseases apparently…), I was soon started on daily Copaxone injections as the relapses were coming thick and fast. I was, during the first tumultuous years post-diagnosis, variously taking 8 or so different daily prescription medications (Copaxone, Venlafaxine, Bupropion, Amantadine, Amitriptyline, Modafinil, Gabapentin, Tramadol and Tapentadol, and something for vertigo I’ve forgotten the name of) and there was talk of needing a walking cane for foot drop, and perhaps learning how to catheterise myself when I developed difficulty urinating. I tried progesterone creams and aluminium powders to try and stop the remarkably severe night sweats I was having.
After about 2 years on this rollercoaster, the symptoms began to settle down – some disappeared altogether, some settled down to tolerable ‘background noise’ levels and some, like the brain fog and soul-crushing daily fatigue remained a dull roar. I weaned myself off as many drugs as I felt able as I went along. At this stage in my evolution, I was a poster child for conventional medicine. My theory was that if you were broken in any way, either physically or mentally, then you just had to find the right drug that would ‘fix’ it for you.
My MS taught me that even the most cutting edge pharmaceuticals could not always address the symptoms I was suffering. Like Modafinil – used by the military to keep fighter pilots sharp while flying long missions, used in the treatment of narcolepsy – I was taking three times the recommended dose and still needed my mid-day nap. That usually lasted at least 2 hours…
An Aunt with Myalgic Encephalomyelitis (ME) mentioned to me that she had felt enormous improvement in her daytime fatigue by giving up gluten. I’m not gonna lie – there was a small snort and accompanying eye roll when I read her email about it – dietary changes weren’t what was needed here. I was PROPERLY sick. I had BRAIN DAMAGE. I needed PROPER medicines. In fact, because proper medicines hadn’t provided stellar results thus far, I was quietly convinced that my level of ‘broken’ was particularly serious and I really needed to get my hands on something like Ritalin (an Amphetamine) or something more high-powered in order to address my problems more effectively. But, in the interest of open mindedness, and because I Googled ‘gluten and neurological symptoms’ and found, to my surprise, that there is a lot of scientific evidence linking dietary gluten to symptoms such as brain fog and debilitating fatigue (two things that, now the worst of my physical symptoms had subsided, were making it impossible for me to think I could survive the day back at work (I’m a Veterinarian), I decided I’d try gluten free (GF) for a month. I was quite, quite sure I would be unaffected by my efforts and in 4 short weeks, I could go back to chowing down bread buns, cake and bowls of pasta aplenty.
Imagine my surprise when less than a week after going gluten free, I felt a gazillion times better.
I was sleeping less – about 7 hours a night instead of 9 – I didn’t need my daytime naps anymore and I started to look for part time work!
It was amazing. I suddenly became aware of the power of nutrition – an aspect of health I had thus far ignored. For two YEARS! As I told myself at the time ‘They were talking about self-catheterisation so I could urinate, y’all!!! This MS thing was slowly taking my dignity, there was no goddam way I was giving up ANYTHING else!!!’
Which, in hindsight, is an unfortunate way of looking at things. What indignities and pain might I have been spared if, at the time of diagnosis, someone had said to me “You know, you can really improve your quality of life and minimize the impact of this disease by making some actually-very-simple dietary and lifestyle changes.”? I’m quite sure the symptoms I experienced would have been less severe if I had made such changes – like giving up gluten – sooner rather than later.
Anyway, with the lightbulb finally going off (good nutrition = good health), I threw myself wholeheartedly into the brave new world of therapeutic nutrition. I’m not even sure it’s technically ‘therapeutic’ nutrition, it’s just NUTRITION! I was introduced to many an awesome quote such as;
“If diet is wrong, medicine is of no use (because it won’t be able to work properly); if diet is right, medicine is of no need” – Ayurvedic proverb
“Let food be thy medicine and let medicine be thy food” – Hippocrates
I mean, Hippocrates! The father of medicine! This wasn’t just some new-age, organic, hippy-dippy BS, there was something ancient and logical and wise here I realised. My brain was on-board too. Up until this point I’d struggled in being able to stick to ANY diet – restriction soon became; I.must.eat.it.now. So initially, I half expected that I might engage in similarly self-destructive behaviours, gorge on gluten, and end any of the progress I was making.
I needn’t have worried.
I think, because I’d felt SO very low while eating ‘normally’ (i.e. gluten heavy meals and snacks), and felt SO very much better having ditched the gluten, I became really quite averse to the idea of eating it. It was no hardship at all to avoid it. And here I am, over 3 and a half years later, and still very comfortably following a GF route!
My GF experience led me to really look in to the tremendous power of nutrition on our health. I came across the Swank and Wahls diets (amongst others) for MSers, and decided I’d give the Swank diet a whirl – followers are called ‘Swankers’ which made me chuckle. Swank and Wahls are quite different; one is a very low (saturated) fat approach (Swank), the other is more like paleo with a large amount of so-called ‘good’ fats (Wahls). Devotees of either can be off-puttingly devoted from my experience of various FB groups, but I’m really very sure both/either can work wonders for our health.
Having tried both of them for at least 6 months apiece, I found that a Swank-esque approach suited me best. I’m not a strict observer of the Swank diet rules for sure (I was initially, they’re pretty easy to stick to for the most part), but as a lover of the carbohydrates, I found this approach triggered less of a ‘restrictive eating’ diet mentality and I could incorporate it in to my eating likes fairly peacefully. Some people like the paleo, grain free approach – others take it a step further in to the realms of the ketogenic diet. There is a lot of research out there on the benefits of entering and maintaining a ketogenic metabolism (using ketones from breakdown of fats for energy rather than the glucose everyone else uses) – particularly for brain health. I tried it. Ben and Jerry’s had a good month. I.e. my brain did NOT, in fact, enjoy subsiding on eggs, mayonnaise, kale and butter, and rebelled against the rigidity of the lifestyle. By demanding ice cream.
The notion of Ben and Jerry’s reminds me of something else interesting. After I had given up gluten and was feeling so much better, I noticed that if I had a dairy-heavy day (had a Starbucks latte in the morning and ate a pint of fat free yogurt with fruit and honey and granola for lunch) I suffered fatigue and brain fog that evening and the next day. Dr Google provided me with evidence that shows dairy can have similar effects to gluten in some individuals. Cross reactivity of the proteins in some important receptors or some such thing. It’s the casein protein in milk apparently, not the whey protein. So I can add whey protein powder to my shakes should the notion strike me, with no ill effects at all.
So I limit my dairy intake these days. Not quite dairy free – I’ll have a spot of cream in my coffee and the odd bit of cheese, but I will *usually* go for the Ben and Jerry’s or Hagan Daaz dairy free offering and have non-dairy milk alternatives in the fridge.
I guess the take home message here is that good nutrition is the foundation of good health. And this looks slightly different for different people – there is no one-size fits all. It used to surprise me as I made my way on my own personal journey, how often people were willing to try different Disease Modifying Drugs (DMDs) for their MS, with all the associated side effects and serious health risks like liver failure and leukemia, but were not willing to try a dietary approach. Or do try one, don’t feel any better and so give up entirely.I’ve also realised that the drug companies do not want to cure you – why would they want to lose out on over SEVENTY THOUSAND DOLLARS a year (the cost of Copaxone alone)? A cure makes no sense to them – they are NOT looking to find one. But the vast majority of people still believe the conventional medical profession has their best interests at heart. Trust me, it doesn’t.
However, I also need to say; ‘Thank GOD for pharmaceuticals!!’. There were many times in the past 5 years where they have made my life bearable and I’m so very grateful to them for that. But, if I knew then what I know now, would I have needed them at all?
Back in the spring of 2015, a year after going gluten free and 6 months of Swanking, I began to prepare for my upcoming move to the USA (planned for the end of the year). The idea of paying thousands and thousands of dollars for healthcare made my thrifty, Scottish, NHS-loving blood run cold.
Hell to the no.
I slowly but surely started weaning myself off the drugs I was still taking and by the time the move came, I was completely drug free and feeling healthier and happier than I had in a long time.
Little did I know that my world was about to come crashing down around my ears, but I’ll save that story for next time 🙂
Dr Margaret Finlay BVMS (DVM) PhD