Jagged Little Pill

I had always said that I didn’t want to tackle my MS with drugs, not least because I have a serious aversion to needles.  Yet four months ago I found myself sitting in the MS nurses’ office injecting needles into a square piece of foam rubber (a very basic representation of the human body).  The syringes containing my daily 20mg shot of glatiramer acetate (or Copaxone, to use its brand name) are reassuringly small.  Unfortunately, the smallness of the syringes and the clumsiness of my MS-riddled hands are not a good combination.  This soon became apparent as the syringe skidded around on the foam practice block (thankfully not my actual skin).  It was time to bring out the big guns.  The plastic auto-inject contraption is much larger and scarier-looking than the delicate little syringes, but this was the only option I had, unless I fancied severely disfiguring myself.  I sat on the bench in the office and diligently loaded the ‘pen’ with the syringe as demonstrated.  So far, so good.  But then I actually had to press the button to activate the spring to send the needle through my stomach.  This took a lot of whinging, whining, procrastinating and a very patient nurse.

I always had a belief – and still do – that there were other things that could be done before I resorted to filling myself with chemicals.    My instinct to some extent was correct. Through the wonderful work of Professor Jelinek and his Overcoming Multiple Sclerosis programme, I had discovered the importance of Vitamin D for people with MS (people with MS are often Vit D deficient).  I duly made an appointment with my GP to get my levels checked.  In ‘normal’ people, a Vit D reading of 50nmol/L is considered average, and 25nmol/L is too low.  My result of 23nmol/L was below low, and was leaving me in danger of suffering further relapses.  The GP prescribed a Vit D megadose, and I have been supplementing ever since.  As a consequence, my ‘MS fatigue’ is now a thing of the past.  I have also radically changed my diet in an attempt to control my MS, and I am now a fish-eating, sat-fat swerving, (practically) vegan.

As well as promoting healthy eating, Professor Jelinek (being a medical man) understands the importance of drugs for those with more aggressive forms of MS.  As I had suffered two relapses in a short space of time which had left me struggling with my mobility, another weapon in my armory wouldn’t hurt.  My own experience of ‘diet versus drugs’ is that my main Neuro (let’s call him Dr P) has been very dismissive of my holistic approach.  Dr K (the guy prescribing my drugs) was more open to the idea, but felt that diet alone could not work.  Dr L spoke excitedly about all the drug options that would magically open up to me, once I’d agreed to taking Copaxone.  I would qualify to try all sorts of new drugs, not yet on the open market!  How exciting was that?!  Honestly, Dr. L?  Not very.  I left Dr L’s seedy drug den feeling smug in the knowledge that I was already looking after myself better than any of her suspect-sounding concoctions ever could.

Due to the disinterest my neurologists have shown in my self-managing techniques, I was surprised to find that, when it comes to choosing Disease Modifying Drugs (DMDs), the impetus lies very much with the patient.  I was handed a glossy cocktail menu of drugs and told to go away, research and pick one.  (Bearing in mind that brain fog and confusion can be a common symptom in MS patients, this didn’t seem like the most sensible idea.) Whilst quick to push the drugs, my neurologist was less keen to explain what the drugs would do, exactly.  Perhaps he didn’t think I would understand the long medical words used in the technical jargon, or perhaps – more likely – it’s because the medics themselves don’t really understand how these things work.  The bottom line is, DMDs will ‘help to slow the progression of MS’.  I won’t actually see any physical benefit from taking them; I can just rest assured that, were I not taking them, I would be getting worse a hell of a lot quicker.  I don’t know; perhaps my Neuro is in possession of a crystal ball… (Professor Jelinek gives a much more detailed explanation of Glatiramer on his website, here.)

It took me a while to come round to the idea of Copaxone – chosen because it has the fewest side effects, despite the fact it requires daily injections.  Breakfast is now porridge, green tea, Vit D, flaxseed oil, fish oil and a stab in the leg/stomach/hip. But drugs will never become the be all and end all for me.   I can’t imagine going through the hassle of daily injections if I wasn’t doing everything else I could to support myself and my body on top of that.   Professor Jelinek (and many others) has already proved that it is possible to recover from MS and stay well through diet, and I believe that I can also achieve this.  Professor Jelinek was on Copaxone for 7 years before he came off it and has stayed well ever since through his dedication to his lifestyle.  For me, the OMS lifestyle is my frontline defence, and Copaxone is my Plan B safety net.  So, for the time being at least, I will diligently perform my daily injections, safe in the knowledge that the bruising and injection marks have put paid to my career in bikini modelling.

As I left the MS nurse’s office, not only with a month’s supply of syringes, but also with a snazzy new rucksack (rather reminiscent of joining the Midland Bank in the 1980’s…), she said:

‘Now that’s over, you can go and treat yourself to a chocolate ice-cream!’

That wouldn’t be happening.  I explained my healthy eating regime.  She looked at me as though I’d just claimed to be the reincarnation of John Lennon.  One day, perhaps medicine and diet can become happier bed-fellows.  Perhaps diet can help eradicate the need for so many drugs?  Perhaps that’s what medicine (or at least its staunch advocates) is afraid of?