So, how do you feel about your MS?
The biggest joke of your life?
A royal pain in a less magnificent backside?
Or, just something to be had, whether you like it or not, and that includes the big bag of medicines and vitamins you pick up from your pharmacy every four weeks?
Little secret: I get giddy when I pick up the 850 or so pills that will sustain me the next four weeks. They’re my lifeline, and even though they’ll not be able to take away all of the wretched facial pain, severe fatigue and other symptoms, they do serve a purpose.
Nevertheless, when temperatures rise, the misfortunes of summer-related heat sensitivity have already caused odd juxtapositional events. But, instead of focusing on those, why not talk about another sunshine-related subject, one that also provides many unexplained peculiarities?
MS is one giant paradox, that much we know. Friends, for example, frequently point out how complex MS is:
- People with multiple sclerosis require X to improve their health
- In order to receive X, they need to perform Y
- But, when they fulfil Y, their symptoms get worse
- Therefore, X, Y and Z contradict each other at each turn
Result: you wonder whether you are doing the right thing, and those in your environment roll their eyes so far back they can see their brain because they have their idea of how you should live which quite often, is not how would live it. Walk a mile in my shoes, etc.
I remember a friend saying this after being diagnosed, “By gob, you’ve become such a hot mess of contradictability!”
I hoped the sentence would end at “you’ve become hot” just like anyone would at my age.
It didn’t. Ergo: bruised ego.
I could live with “mess,” I suppose. Unpredictability = changing schedules, cancelling appointments = one big mess.
“Contradictability?!?” Despite being a grammar nazi, I was usually the one saying absurdities like, “Let me get a coff of cuppie and we can talk about why things are lying flow in Irish pilitox.”
Life in Ireland.
Always expect the unexpected.
All the above just adds to the unpredictability of MS, none which is self-induced.
You fight, you take your medicines and you reinvent yourself
After approximately 5000+ days with multiple sclerosis, this is one of the many snarly things it has taught me: MS is a game of opposites, idiosyncrasies, and a game of who can win the most challenges between 2AM and 11PM. On any given day, you think you dispatched the dragon to another kingdom. You may feel you earned the trophy. But, MS will laugh at you the following day and say, “Kid, you were not the winner, and in fact, you didn’t even come close.”
Just yesterday, I was talking to another friend who began talking about my “current status of MS because I haven’t necessarily been boomshaka–whatever lately.”
Hearing “status” and “MS” together – as if I am a Microsoft Windows 10 Professional version, it felt as if I was about to experience more updates to Windows’ ever-expanding ingenuity. As for boom-whatever, I’ll pass on that one. Her reply? “Nah… let’s just do a reset or even better, two clean installations of your central nervous system, just in case. And two holidays in the sun to soak up Vitamin D.”
Just. In. Case.
I really need to look for friends who have a vocabulary that is less emotionally demanding.
But, let’s get back to business, as I am here today to be less formal than the Encyclopædia Britannica but still nice enough to talk about our relationship with Vitamin D, AKA Dee.
So, how about a tale about Viking-genes?
Research over the years found that the further from the equator you live, i.e. Northern Europe, North America, Australia and New Zealand, the higher the risk of being diagnosed with MS becomes.
A geographical distribution of MS is still just a geographical 2D map that as yet, still hasn’t given up all its secrets, like why is MS more prevalent in the northern region of the northern hemisphere? Why is it equally more prevalent farthest from the equator in the southern hemisphere? (One thing to keep in mind however, is that MS is not an infectious disease)
As someone mad about history, I find the following suggestion rather fascinating. Fact is, between the 8th and 11th century Vikings (official name: Northmen) were not afraid of sailing far and wide on Viking raids along European coastal areas and beyond, and pillaged and colonised parts of Europe, Greenland and Newfoundland. They enthusiastically shared their genes and assimilated with the societies they invaded – as one would from the 8th to the 11th century when there’s not much to do around town.
The running idea is this: it’s likely that the origins of MS can be traced back to the Vikings, and considering MS is most prevalent along the geographical areas they invaded, speculation exists whether later European colonists and settlers ferried MS around the world.
“I found elusions to an interesting report on MS in Kuwait which has been sighted as evidence of a genealogical trace back to the Norse. In the study it was observed that Arabs of Palestinian descent, living in Kuwait, were 2.5 times more likely to develop MS than Arabs of Kuwaiti origin. Along with significant differences in eye color, blood type and other factors, it was determined that susceptibility to MS was related to origination to the Eastern Mediterranean Basin.
One of the authors of the above study, neuroepidemiologist Dr Charles Poser, proposed that a traceable genetic susceptibility may be at work and followed that back with historical, anecdotal and genetic clues to the Vikings of Scandinavia.”
(Please check out Chef Interrupted, by Trevis)
Ergo: people diagnosed with MS today might be carriers of ‘Viking genes’ that can make people “particularly susceptible to MS.”
Following my facts-first stance in life, my question therefore is, “When, how and why did Vikings even have MS in the first place?”
Going back to today, further research shows that in the UK, there is a surprisingly higher prevalence of MS in Scotland than in Wales or England. This includes areas around the world that have been settled by Scottish immigrants, like the north of the island of Ireland from the 17th century onwards.
The highest prevalence rates per 100,000 people are:
◾ Orkney: 402/100,000 (Scottish Northern Isles)
◾ Shetland Islands 295/100,000 (Scottish Northern Isles)
◾ Mainland Scotland: 229/100,000
◾ Canada: 290/100,000
◾ Ireland – County Donegal: 185/100,000
◾ Ireland – County Wexford: 121/100,000
◾ Northern Ireland: 168/100,000
◾ US: 110 to 192.1/100,000, from the Eastern and Western census, respectively
Equally refreshing to learn, specific indigenous groups living in countries with a high prevalence of MS have a strikingly lower chance of being diagnosed like the Inuits in Canada, the Sami or Lapps of Northern Scandinavia and the Maoris of New Zealand.
This is where the role of Vitamin D might come into play, as the most important natural source of Vitamin D comes through exposure of the skin to sunlight. In the geographic areas cited above, there are fewer hours of daylight and thus less chance of catching rays of sun. This opens up the story of Northern Europe, Vitamin D, Vikings and eventually, multiple sclerosis.
Over the past few years, people with MS have eagerly read and listened to information about the relationship between both, either as a means to prevent diagnosis or to use Vitamin D as a valid treatment option to delay symptoms or degeneration.
Yet, it remains a challenge finding out whether its deficiency is the cause or just a consequence of chronic illnesses.
Common sense teaches us that if you have a chronic illness, you are more likely to spend a lot of time inside as your illness often forbids you from doing any outdoor activities. Hence, people miss out on direct sunshine which results in their skin being unable to build up a sufficient Vitamin D level.
As research continues on what prompts neurodegeneration and which role Vitamin D plays in MS overall, the need to find answers is as urgent as ever. If individuals can protect their immune system with sufficient levels early in life, they may become less immunocompromised.
If you’d rather go without taking supplements, how and where do you pick up a natural serving provided by Mother Nature?
The most important source of VitD is through exposure of the skin to sunlight, especially during childhood to lower the risk of developing MS later in life. The older you get, the less you need. In a study of twins, the twin who developed MS was the one who had less sun exposure as an infant.
How much do I need?
■ If you have fair skin, 20-30 minutes of sunshine on your face and forearms 2-3 times a week creates enough Vitamin D to take you through during the summer months in the UK. Even if you think the sun is not feeling all that warm, you don’t need sunburn to create Vitamin D (Warning: excessive sun exposure can cause skin cancer).
■ On the other hand, if you have dark skin, are obese or prefer to show less of your body, you will generate less Vitamin D. In this case, and if you live in the UK, trying to catch enough between October and April will not be enough to get your body to transform sunshine into Vitamin D. Much needed Vitamin D can be earned through eating food that contains the D-word.
The general assumption is that a person who spends some time outside a few times per week will produce sufficient vitamin D. However, according to the ODS, this can differ depending on:
■ time of day
■ the presence of cloud cover or smog
■ the color of a person’s skin
■ whether a person is wearing sunscreen
Being in direct sunlight behind a window will not aid vitamin D production because glass cuts out the radiation that produces vitamin D.
Before I go on, if you want to know more about your Vitamin D levels and before you take over-the-counter supplements, ask your GP or MS team if they can organise a blood test to measure how much of the good stuff you require. Clinical trials are still looking into how much one might require to be safe and suitable. As with any drug, too much can produce toxic reactions; and if you’re dealing with MS already, you can do without poor appetite, constipation, nausea, instability and weight loss. In addition, vitamin D toxicity can lead to elevated levels of calcium in your blood, which can result in kidney stones.
As soon as I found out about the possible link between MS and VitD, I went through old blood analysis results and I received an invisible smack to my face because proof was there, right in front of me.
According to the Institute of Medicine (IOM), the following values determine your vitamin D status:
■ Deficient: Levels less than 12 ng/ml (30 nmol/l)
■ Insufficient: Levels between 12–20 ng/ml (30–50 nmol/l)
■ Sufficient: Levels between 20–50 ng/ml (50–125 nmol/l)
■ High: Levels greater than 50 ng/ml (125 nmol/l)
Also, in food it occurs in two forms. Vitamin D2 (ergocalciferol) occurs naturally in yeast and some mushrooms (chanterelles and shiitake) while D3 is also the form that we make in our skin cells. Some foods have Vitamin D added to them. These ‘fortified’ foods include some margarines, breakfast cereals and white flour. Check the label to be sure.
■ Oily fish:
- Cod liver oil
- Wild salmon
- Canned tuna
- Pickled herring
■ Cod liver oil
■ Egg yolks
■ Cow’s milk
■ Soy milk
■ Food fortified with Vitamin D like cereals, orange juice, etc.
Both the European Food Safety Authority and the NHS suggest that adults should not exceed 4000 IU (100 micrograms) per day, as it could be harmful to your health.
The RDA of vitamin D for all people aged 1–70 is 600 IU. For children below the age of 1, it is 400 IU, and for adults over 70, it is 800 IU. This assumes that a person has the minimum amount of direct sun exposure.
Even with Dee, MS is a fluctuating, never-ending, symptom-squeezing bummer.
Looking back, as a child I had a good amount of VitD coalescing with my immune system. Since I am the only one in my family with MS, I still wonder where on earth mine came from.
I oh so bloody hate it when that happens.
As I suggested at the top of this page, MS is so laborious in its unpredictability and its flair for paradoxes, it wears you out just thinking about it. Let’s go outside so for some much-needed sunshine.
More on Vitamin D and MS
■ Latitudinal variation in the prevalence of multiple sclerosis in Ireland, an effect of genetic diversity (McGuigan, McCarthy, Quigley, et al., Journal of Neurology Neurosurgery & Psychiatry)
■ Vitamin D and multiple sclerosis: a comprehensive review (US National Library of Medicine National Institutes of Health)
■ Prevalence and incidence of Multiple Sclerosis (MS Trust)
■ UK MS Society research into Vitamin D (UK MS Society)
■ MINIREVIEW: Vitamin D and Multiple Sclerosis (Society for Experimental Biology and Medicine)
■ Vitamin D: What’s the “right” level? (Harvard Medical School)
■ Possible role of Vitamin D in multiple sclerosis (YouTube)
■ Vitamin D and multiple sclerosis: An update (ScienceDirect)
■ The way forward with Vitamin D in multiple sclerosis (ScienceDirect)
2018 Winner Best Blog Post with ‘3443 Needles’, Blog Awards Ireland, Ashville Media Group, Dublin, Ireland
◾ MyTherapyApp: Multiple Sclerosis Blogs: 10 of the Best in 2019
◾ Ireland Blog Awards: Finalist 2014, 2015, 2017
◾ MyTherapyApp: Best MS Blog for Simplicity 2018
◾ Everyday Health: Top 10 MS Blog of 2018
◾ Feedspot: Top 50 MS Blog 2017, 2018, 2019
© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2018. Unauthorized use and/or duplication of this material without express and written permission from this site’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and irelandms.com with appropriate and specific direction to the original content.