Living

My MS Story

So, I was a normal 13 year old girl, attending school, making new friends following an across the sea move from Canada and basically just getting on with being a teenager.

When I couldn’t see the basketball hoop at school, I had no idea that this was the start of something really scary, life changing in fact.  I just thought that I needed glasses – what other reason would there be for the hoop to look fuzzy?  I must have mentioned this to my parents – cue LOADS of different tests, including one where I was able to miss school (yes!) and have electrode type things put all over my head whilst, I am guessing, the doctors looked to see what my brain was doing.  I still remember sitting in the car on my way home from that appointment, picking away at the glue like stuff stuck in my hair.  I apparently had a CAT scan, but I don’t remember this.  The verdict? Optic Neuritis – I had a blind spot in my left eye, with normal vision surrounding it.  It went back to normal within a couple of weeks – and I thought no more about it.

Fast forward two years and I am having a brilliant time visiting London with two friends. Then I wake up in the morning and can hardly move both of my legs.  Cue loads of piggy backing through Oxford Street, initially laughing hysterically and then less so, as I start realise that this isn’t quite so normal.  But this is 1994, before iPhones  and text messaging so, from what I remember, I didn’t actually mention anything to my parents until the evening, when I arrived back home.  At which point my Dad took one look at me and said ‘you need to go to bed and rest’.  Now, looking back  – and knowing what I know – I am sure my parents knew.  They knew I had MS.  Mum is a physiotherapist and Dad’s a GP and I have since found out that optic neuritis is a common ‘first symptom’ of MS, with roughly 50% of those who get it going on to be diagnosed with MS at a later date.  So I was at the GP’s the next morning and an inpatient in the nearest teaching hospital within a few days. My memories of this time include a really good looking young male physio looking at the strength in my legs (hugely embarrassing for a 15 year old girl), overwhelming heartburn from the steroids I was given and my poor parents sitting me down in my bedroom telling me that I had MS.  I can only imagine, now as a parent myself, how traumatic this must have been for them.


To be honest, the years after this were a blur – I remember feeling ‘different’ to my friends and completely inconvenienced by the relapses that got in the way of my life.  I told only a few close friends and my boyfriend at the time, so when I went to my 6th form ball with another dodgy leg, I found it difficult to explain why I was limping and avoiding the alcohol I would have had otherwise.  But that was my last relapse for ages – 8 years! – so I managed to go to Uni for 3 years, work for a year, then complete a 2 year Masters degree without relapses. MS turned into a distant memory.  I partied, worked hard and generally had a great time.  When optic neuritis eventually surfaced again (3 attacks in an 18 month time span), I panicked, but was soon reassured by a neurologist who told me that my MS was ‘mild’ and, in fact, what they would describe as ‘benign’.

Again, life happened… work, marriage, 2 babies…no relapses.  I had benign MS!! How lucky was I?  I never thought about it, I loved going to the gym, socialising with friends, I ate whatever I wanted and I completely, utterly, never read about MS or associated myself as having MS.  I wasn’t sick, why should I?  Maybe I was so well because I had such a positive outlook?  Until the day that I decided to go out for my first run after having my daughter and felt like I was running through treacle.  After a minute of jogging, my legs wouldn’t lift up, I could feel myself tripping up on the path and I had to stop and go back home.  This happened time and time again, until I gave up on the idea of running, then doing aerobics, when I couldn’t coordinate my legs and, finally, swimming, when my legs went numb after swimming a couple of lengths.

At this point, I requested a referral back to a neurologist, whom I  hadn’t seen in 5 years. Once again, I was told that I still had ‘benign’ MS and did not qualify for any meds – I was told this time and time again over the next three years.  This is despite the fact the numbness and heavy legs came on sooner and sooner, not just with heavy aerobic activity but also with gentle walking (such as taking my children to school, 5 minutes away). Balance and fatigue also became major issues (falling down in Specsavers, anyone?!).

I started to read up about MS and learned that, according to the MS Society, 65% of relapsing remitting MS patients will go on to develop Secondary Progressive MS (SPMS) within 15 years.  SPMS is “characterised by a worsening of disability, rather than by relapses followed by recovery”, according to the MS Society.  By 2013, I was 19 years post diagnosis (21 years since my very first bout of optic neuritis) and I knew this was me.  This is what was happening.  And, at my last neurology appointment, a new doctor confirmed my thoughts, finally.

After reading Overcoming Multiple Sclerosis by George Jelinek, I kicked myself for not reading up on MS when I was first diagnosed, and learning about the work of Dr Roy Swank, who found that following a very low saturated fat diet can halt progression of the disease, provided it is followed from early in the disease.  I decided better late than never and embarked on the OMS lifestyle, with the help of the fabulous website and book, from November 2013.

So, that is where I am.  I now use crutches for short walks outside of the house and a scooter for taking my kids to school or going out for longer distances.  I have MS fatigue and occasional ‘cog fog’, when I forget words.  I try and stick to OMS 100% of the time and I feel this helps with tiredness.  I hope that it is at least slowing the progression of the disease somewhat, though I guess that I will never fully know.  It helps me to at least feel that I am doing something to help myself; I do not qualify for any medication, being SPMS, so the onus is on me to help myself as much as I can.  OMS, yoga and meditation help, as do duvet days with a glass of wine and good movie.

A big part of my ‘recovery’ is having the chance to talk to, and maybe even help, others. I felt blogging may play a part in this, so big thanks to anyone who has read this far. Please feel free to comment!

 

Jen 2

 

 

 

14 thoughts on “My MS Story

  1. Jen, what a story. How your symptoms mean that you don’t ‘need’ medication is beyond me but I can only imagine that the side effects of the medication are terrible and they don’t want to put you through that until necessary? It must be so frustrating. I love your dedication to your diet though. I think I need to become strong and adjust my diet to help my conditions. Glad to have found you x

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    1. Yes, it is all a bit confusing – because I only had a few relapses for the first 18 years after being diagnosed, they thought it was too ‘mild’ to medicate. Now that I am secondary progressive, there are no medications that are shown to actually stop the progression – hence me being so determined to stick to the diet! I do take some stuff to help with symptoms though, so I do have some things that help, luckily ๐Ÿ™‚

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  2. Thank you for sharing your story! I am 3 years into my diagnosis. I just recently helped someone newly diagnosed wade thru her MS diagnosis. Talking and writing about it is good for all of us.
    I did an elimination diet to identify inflammation triggers and stick pretty strictly to it. It has helped with fatigue and fog. Best of hopes for you going forward ๐Ÿ™‚

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