As the months (then years) passed after stopping Avonex and distancing myself from the healthcare team, it became clearer and clearer to me that multiple sclerosis was not my problem. It started with a hunch. Fully into my counselling training and convinced of the relationship between psyche and physical, I wrote this on 2 November 2013:
Why I don’t think I’ve got MS or ever did have.
This year, my psychosomatic reaction to Dad’s illness and death (IBS, lack of left limb co-ordination, aching muscles hamstring and bum etc etc…clearly not MS symptoms – too up and down, have gone on too long, directly linked to emotional state) have made me question whether any of the ‘MS’ symptoms I’ve had for the past 11½ years have actually been the condition or psychologically/emotionally instigated.
To clarify, I did have symptoms, I wasn’t making them up. I simply question their cause. Also, I always reported even the slightest thing, often just to have something to tell the medical profession.
[I then list all the physical symptoms I’d experienced over the years and noted in my MS relapse diary.]
Essentially, I feel there are no symptoms here that couldn’t have been caused by my brain as distraction, emotional expression or whatever. When I was diagnosed, I had optic neuritis and was anticipating having MS as I’d looked it up on the internet [beware Dr Google!]. So at the time, I didn’t question my diagnosis AT ALL. I completely accepted it.
Yes, MRI scans have confirmed that I do have lesions on my brain. My original scans have been lost(!), so a comparison over the ten years can’t be made. I expect to face resistance to my thinking – that I’ve had a difficult period of change recently, so having doubts about this too is understandable; that I’m well because the interferons work; that the neurologists’ judgement is not to be questioned; that I’ve had symptoms that prove I must have MS.
But all these years I’ve borne the weight of the MS diagnosis, and believed myself to be a person with an incurable neurological condition. Everybody, including myself, expects me to be ill.
It is easier to see with hindsight that MS was a poor explanation of my symptoms (and as it turns out, the reasons are far more prosaic even than a ‘physical expression of psychological distress’).
At the time of diagnosis, there was hardly anything to go on. But that’s relapsing-remitting MS – it’s a slow-burner, a hard-to-pin-down collection of vague symptoms that form a pattern over time. Some people really suffer with it, I’m not questioning the existence of MS as a condition.
I used to be so pleased that it had been caught early. Now I wonder how things would have developed without the diagnosis and interferon.
Because carrying on as if I had MS did a lot of damage. The diagnosis didn’t help and, in fact, made things worse. It accelerated my real problems; but the irony is that if it hadn’t, I may never have realised what was actually wrong until it was too late!
So all I’ve been telling you about so far – the MS, the Avonex – is just the context, the background events that led to the process of restoring my physical self and experiencing a metamorphosis. It’s only through this process that I’ve learnt exactly how wrong the MS diagnosis was.
And it’s the story of this process that I really want to tell, because what I’ve discovered and how I discovered it astonishes me still.
NEXT: Fungal overgrowth, blocked lymph and a busted ankle
Photo by Skye Studios on Unsplash
The medial malleolus 