Lost in a Medical Wilderness

I watched a You Tube TedTalk this morning entitled What Happens When You Have a Disease That Doctors Can’t Diagnose.  It is presented by Jennifer Brea who suffers from ME (Myalgic encephalomyelitis), also known as CFS (chronic fatigue syndrome).  A link to this video can be found here:

Click here

This woman’s plight really resonated with me because I can see so many similarities with this condition and MS.  Not only in symptoms such as muscle weakness, extreme fatigue and brain fog (to name just a few), but also because there is convincing evidence that in at least a proportion of ME/CFS patients there is an autoimmune aetiology.  And like MS, women are more likely to suffer from the condition than men (I believe with MS the ratio is 3:1 and with ME/CFS it is 4:1). 

The incidence of autoimmune disorders has literally skyrocketed since 1950 as you can see from the below graph.

This may be partly because, in the case of MS for example, prior to the advent of MRI and CAT scans, it was often diagnosed as Hysterical Paralysis.  It was only when these new-fangled scans revealed brain lesions in patients presenting with the symptoms that were hitherto thought to be “hysterical” in nature, that the disease we now know as Multiple Sclerosis became easier to diagnose.  I’d like to able to say, “and treat” here but I’ll leave it with “ and understand”.

Possibly the earliest documentation of multiple sclerosis is the case of Lidwina the Virgin, who lived in Schiedam, Holland. In 1395, age 16 years, Lidwina developed an acute illness and subsequently fell while skating on a frozen canal. Later symptoms included blindness in one eye, weakness and pain. After canonization she became the patron saint of both figure skating and sickness.  At the time her condition was attributed to elements of marked religiosity, mysticism, histrionic behaviour, and even self-mutilation.  Many years later the features of multiple sclerosis were first defined by Jean-Martin Charcot, neurologist at the Hôpital de Salpétrière in 1868, as ‘la sclérose en plaques’. In particular he made the distinction between the tremor of paralysis agitans (later called Parkinson’s disease) and that of multiple sclerosis.

ME/CFS has yet to benefit from the kind of science offered by MRI scans so patients can often find themselves hopelessly lost in a medical wilderness, wandering from doctor to doctor in a desperate attempt to find a cause for their baffling affliction.  I totally understand that this must be a source of extreme frustration, anger, desperation, confusion (insert any number of negative emotions that totally stuff up your life) because I had four years of that prior to being diagnosed with MS.  I spent a fortune traipsing round doctors, specialists, physiotherapists, natural healers – I even had extensive spinal surgery to no avail obviously! 

One of my more memorable medical encounters (which I can laugh about now) happened just two weeks before I was eventually diagnosed which I have shared here.

Mad Cats and Medicos

I seriously felt like writing to that cocky upstart and thrust my MRI report under his arrogant, know-it-all nose.

Anyway, moving on, obviously I didn’t.  I came home and tried to figure out what might help my condition.  I leapt on websites and groups that promised almost miraculous changes.  All I had to do was adjust my diet it seemed, so I bought books, joined groups and became totally immersed in the idea that this was the answer.

Evidently what I needed to do was eliminate S.A.D. Foods (Standard American Diet Foods)

Here is the full list of things I shouldn’t be eating:

• Food that has been chemically altered in some way to extend shelf-life
• Processed food – found in most packaged products and fast foods
• Gluten – found in ALL grains (wheat, rye, barley, rice, corn, oats, sorghum, millet & buckwheat)
• Processed fats and oils (canola, rapeseed, corn, canola, saffron, sunflower, peanut, soy bean oils, margarine and shortening. 
• Sugars & sweeteners (anything with high fructose corn syrup, agave, cane sugar, maple sugar and honey.  Commercially made Fruit Juice as it is high in sugar and don’t use artificial sweeteners.
• Dairy
• Food additives made to alter colour or texture and extend shelf life
• Conventionally raised animal products
• Corn
• Soy
• White table salt
• Cross reactive foods – dairy, milk chocolate, millet, oats, rice, whey and yeast
• Eggs
• Nightshades – tomatoes, potatoes (not sweet potatoes or yams), eggplant, paprika, peppers, including all pepper based hot sauces and spices
• Tree nuts & seeds – almonds, walnuts, brazil nuts, pistachios, cashews, and pecan nuts
• Legumes – soy beans, lentils, chick peas, beans, peas, peanuts
• Pork and processed meats preserved by smoking, curing or salting
• All fruits including juices except raspberries, blueberries, coconut, avocado or lemon
• Coffee & caffeinated foods and beverages (including decaffeinated coffee or tea)
• Chocolate and cacao
• Alcohol
• Yeast – bakers and brewers yeast found in vinegar, wine beer, preserves
• Shellfish

REALLY?

My thoughts on this is that it comes down to beliefs.  If I totally 100% believe that cutting out all these foods is going to help my symptoms then I believe that there is a very real possibility that this might happen.  But for me, I actually don’t believe that.  I look at that list and wonder what sort of joy I’m going get out of life eating handfuls of kale and drinking mineral water.  But here’s the other thing – some of these “taboo” foods I love and it’s not the processed foods, hamburgers, fried rubbish etc.  I actually quite enjoy a mainly paleo diet but I’m not hard-core about it.  My body is smart enough to know when I’ve eaten something that doesn’t sit well or if I’ve drunk too much alcohol.  It’s not the occasional boiled egg or stray tomato that’s the problem for me.  I tend not to drink non-caffeinated drinks because that does affect me a bit, but occasionally I love to go out and have a nice coffee somewhere with friends.  It’s the joy, it’s the love and it’s my beliefs, not necessarily the food, (unless of course if you do have a serious food allergy which thankfully I don’t).

And then we come onto this whole issue of healing.  I believe that it is here that I need to pay attention to my own guidance.  In the world of neurologists and well-intended MS people, I have Primary Progressive Multiple Sclerosis (although this may not be the case since I recently developed optic neuritis evidently).  What having PPMS means is that the disease will never get better but will worsen gradually.  Even if I focus on the idea of healing rather than these health professionals telling me it’s going to get worse, where are my thoughts and beliefs?  On the problem, not on the solution.

A lot of people say it’s down to attitude, and they may be right … but for me, I say it’s down to beliefs. Be careful what you choose to believe in and always go with your inner guidance I say.