MS, Diet and Professor Jelinek

I have been meaning to write about MS diets for a while now, but have dillydallied thinking I need to do some research.  Then I had a flash of clarity... No need to overintellectualize.  I don't need to research because I am writing about my own experience – duh, am I writing a blog or what?  So please keep that in mind as you read on.

Even before I was officially diagnosed with MS, but after my GP had ever so quietly uttered the dreaded two letters - I had read a book about MS.  A good friend who had another friend with MS gave the book to me.  The friend with MS had read the book then unselfishly wanted to pass it on.  I didn't, instead deciding it was highly relevant and that I should keep it for future reference.

That book was "Taking Control of Multiple Sclerosis" by Professor George Jelinek MD.  It was published in 2000 - only a few years before I was diagnosed and it utterly and totally became my bible.

Sitting at the desk of my first neurologist, peering over at my notes as he turned his back, I saw it written I had read the book and had a good working knowledge of the disease.  I read the book because when I came home from my GP after he had mentioned MS, I scanned the internet for MS symptoms.  All the funny symptoms I had been experiencing, but didn’t know how to explain all had names.  I hoped and prayed I did not have MS, however deep down I knew MS was what I had.   Knowing about MS prior to being diagnosed helped me feel moderately in control of the big roller coaster ride of what was happening to me.

When I was diagnosed, I was all prepared and psyched-up to start medication - I braced for it.  I assumed I would be put on Interferons or Copolymer 1 (which is now known as Copaxone), both of which were relatively new and experimental.  There certainly was no research on their long-term effects on health.  That day wouldn't eventuate for another seven or so years.  My second neurologist wanted to see how my MS developed before putting me on these drugs... I trusted him, so I didn't insist I start medication.  I am glad I didn't as I had some of the most fruitful and fulfilling seven years of my life without having to inject myself daily and could sometimes forget that I had anything wrong with me at all.  I had no outwardly noticeable relapses or problems that could be linked to MS. 

While on the drug front I agreed to wait, Professor Jelinek made a very good case regarding saturated and unsaturated fats and the immune system.  He collected and collated data from bucket loads of research on the effects of fats in the diets of people with MS, including the research of Professor Swank.  As such I commenced my less than 5g of saturated fat a day diet/lifestyle, as per the diet followed by Professor Jelinek.

I remember eating my last juicy steak at a lovely restaurant.  It was raining outside, but the fire was warm and cosy and I was with my new-ish boyfriend (and future husband).  My steak was big, juicy and medium rare.  I grew up on a farm and ate home grown meat every day during my childhood.  I was concerned that I wouldn't be able to follow my new vegan plus fish diet, as it was so extreme. Surprisingly not eating meat was about the easiest thing I had to give up.  Warm creamy indulgent desserts were the hardest.  It was not an easy path to tread, however it again helped me feel in control of my life, which had been struck by this random, unforseen disease.

Here's a funny little titbit for you about canned tuna.  Professor Jelinek advocated eating oily fish for its omega 3 fat content.  It didn't matter whether the fish was fresh or canned, but for ease of use, especially at lunchtime, canned seemed the obvious choice.  However this posed just one small problem for me.  I abhorred canned fish of any kind.  It all seemed like stinky, mashed up cat food to me.  My husband trained me to eat it... I wasn’t happy about it, but no one I knew had died from ingesting it.  He put a little tuna in my sandwiches, which at first, would make me gag.  Eventually I could manage to scoff tuna patties, smoked salmon and tuna pizza with no issues, which was totally unfathomable pre-MS.  Now I love canned tuna - I can't imagine how I survived without it.

I kept up the strict less than 5g of saturated fat diet for approximately two years.  Sometimes it was a cinch; other times it was hell on earth for me and all those around me.  I had a notebook in which I added up the saturated fat of everything I ate after it had been carefully weighed or measured.  Eating out was incredibly difficult.  Most average restaurants only cater to vegetarians who eat dairy or have no problems eating deep fried food.  I can't even begin to recall how many squabbles my husband and I had over where to eat, the ingredients of dishes and whether it was worth discussing fat content with the server.  I lost a lot of weight, which for me was not a bad side effect!  However my mum thought I was starving myself silly and it didn’t seem to matter how often I explained it to her I could not change her mind. 

I started travelling after I was diagnosed with MS.  On my jaunts I discovered that being vegan plus fish was relatively easy in Canada.  Canadian restaurants seemed to cater to a diverse range of diets and there was an abundance of real vegetarian cafes, stores and restaurants.  There were whole sections in ordinary supermarkets devoted to vegetarian products.  I was also incredibly pleased to learn that hotdog stands in downtown Vancouver sold vegetarian hotdogs.  Clearly I was living in heaven on earth.  However I also discovered that travelling meant being exposed to a huge variety of new and exciting foods.  Sometimes it was very hard to pass up delicious looking foods that would have instantly voided my 5g of saturated fat per day in one mouthful.

My year in China was so much more difficult in so many ways - not least being that I didn't speak Mandarin!  Many Chinese are on the verge of being vegetarian, except for that little bit of meat tucked away under the cabbage.  Dishes like this were classed as vegetarian and our Chinese friends couldn't understand why I wouldn’t eat them, especially when they were so considerately chosen.  It may have been there in minuscule amounts – but it was still there in all its saturated fatty glory.  I also found the constant diet of "wet" food tough sometimes... but western food was hard to come by... so sometimes I just had to eat peanut butter on well-done toast to remember what crunchy was.  Don't get me wrong, authentic Chinese food is utterly amazing – it’s just impossible to record it’s fat content when you don’t really know what you are eating.

Slowly but surely over the years my less than 5g of saturated fat diet has fallen by the way side.  I have found it hard to stay focused on it when there is no in your face, hard evidence of it's ability to reduce relapses.  My neurologist advocates healthy eating, but not necessarily that of vegetarian persuasion.   I still do not eat red meat or chicken, but dairy crept in whilst I was pregnant with my son, mainly cheese, milk in my coffee and delectable desserts too!  My family eats what I do, otherwise I would be cooking at least two different meals every night.  I know it’s not peculiar to a vegetarian diet but my kids don't always love what I eat thus I make them something else.   My husband eats his red meat when he's away on business trips or for lunch at work.

Perhaps the final straw for me and the Professor Jelinek diet came about a year ago.  I was at my neurologist having a check up.  I had my list of questions, as per usual and at the end of those questions I alway ask after Professor Jelinek.  After all my neuro is a MS specialist and Professor Jelinek has MS and is in the medical profession and they both reside in the same city, so surely my neuro would know something about his wellbeing.  But this time my neuro seemed a little annoyed that I had asked after him - he asked me why I wanted to know.  I said something like... because if he is well then in my mind I can be well too.  Well let me tell you what I heard next rocked my world in all the wrong ways.  Professor George Jelinek did not satisfy all the clinical criteria to meet a diagnosis of MS.  Put simply, he does not have MS! 

Can you imagine how I felt?  Cheated, lied to, upset and really, really angry.  I believed in this man and what he was preaching.  I wondered how he could write a book about MS saying, oooooooo I am a doctor with MS - follow me.  How could he know what it was like if he didn't have to wake up every day with MS?

About a year has passed since I was given this news.  I am not angry any more and have ventured to the library to borrow Professor Jelinek’s new book.  I am reading it now.  It is called, "Overcoming Multiple Sclerosis" and was published in 2010.  Professor Jelinek fully owns up to not having any relapses in the ten years since writing his books, but he claims this is due to his diet and lifestyle choices.  He failed to mention not satisfying the clinical criteria of MS.  So maybe his lack of relapses is due to his diet or maybe it is due to a mild version of the disease or maybe it is due to him not actually having the disease.  I’ll leave this for your interpretation.

I do not feel like I am breaking any codes or am being overtly controversial because Professor Jelinek has written about being relapse free himself.  I am critically appraising Professor Jelinek’s assessment and am pointing out that the reason Professor Jelinek has been relapse free may be due to other reasons other than his diet.  Unfortunately some of us may read a book without being critical of it’s content - so I just want to highlight this point.  It's a tough diet/lifestyle and I think it's only fair that one evaluates why the author is relapse free before commencing it.

Although part of me wants to jump up and down and stamp my feet, I am again finding many good reasons to follow Professor Jelineks updated diet from his new book.  He has meta-analysed the fat research and come to the same conclusions as in his first book.  Saturated fat is bad for everyone, but especially for those of us with MS.  He still advocates a vegan plus fish diet for MS-ers.  I have already started to remove dairy from my diet again... it's hard because I love cheese but I keep in mind my responsibility to my family.  If a diet low in saturated fat can minimise the effects of MS… I would be stupid not to get on board because it is something that I can do without medical intervention, expense or side effects (other than weight loss!)

I have not yet finished Professor Jelinek’s new book.  Does it matter if he doesn't have MS?  I don’t know… my opinion and thoughts on the matter change regularly.  I don’t have anything to loose by reading his book, but hopefully I have a lot to gain by following his recommendations.  Fingers crossed.

To be continued...