This is what happened that resulted in me becoming a ‘Person with MS’, and the consequent slow build-up of shitness that I’ve spent ages undoing.
It all began when I left Albuquerque, USA, in early summer 2000 after my brilliant year abroad studying at UNM. The first thing was skin numbness over my left abdomen when I was at a ridiculously hot and humid youth hostel in Boston. Back in Sheffield in my final year I was suddenly getting migraines with strange patches of numbness (though no health professional gave a damn about them) and I’d had a few weird but mild nerve-related episodes (numb patches, tingling, twitching) including a light Bell’s Palsy (where some facial muscles froze).
This all got me referred to the neurologist (April 2001), which led to an MRI scan of my brain a year later (so I could finish my studies). In the meantime I dislocated my right ankle* then a couple of months later had an episode of optic neuritis** (as diagnosed by the eye clinic – I must have told them I was already seeing a neurologist because there was no follow-up or anything). I had the MRI scan in March 2002, and then got an appointment with the neuro in April to discuss the results.
At this appointment, I saw that the MRI scan showed small white patches in my brain (inflammation, apparently), which confirmed what the neurologist said she already knew: Multiple Sclerosis. After getting myself scared by looking up optic neuritis on the internet, I was upset but expecting it, so I never questioned the diagnosis nor asked for a second opinion or further tests.
LOOKING BACK: Was I profiled because of my age and sex (female in her early 20s is common for MS)? Was the neurologist looking for more MS patients to add to the list waiting for ‘disease modifying therapies’ so the powers that be would fund them? She said later that she knew in the first consultation, way before the MRI. Did she really listen to me then? Or had she already decided and so discounted anything that didn’t fit? Why didn’t I seek a second opinion? Why didn’t anyone advise me to seek a second opinion? Everyone (including me) was way too accepting of this, like the worst was expected. But I hadn’t had much wrong – what happened to a ‘wait and see’ approach?
So that was it. I was in the system, labelled as an MS patient and identifying as one too, so everything that happened from then on was seen through that lens. They offered me the only treatment available at the time, which was just coming in to the NHS though it had been around in the US for a few years.
And so, after some [not enough] deliberation, in November 2003 I started taking Avonex (Interferon beta-1a), a weekly (self-)injection into the big thigh muscles. It was supposed to reduce the severity and frequency of relapses, which is what I was apparently having. My other options were similar substances, injected more shallowly but more frequently. I figured once a week would be less disruptive to my life.
Immediately after the diagnosis, I had a couple of months of low energy and all-out weirdness (stresssssss, no?). Then nothing dramatic for a year or so; a bit of facial twitching. When I started the injections I’d been having this strange vertigo and walking like I was drunk (the GP said it was a virus in my inner ear*; the MS nurse said the interferon would probably help clear up the virus; in the end, it never really resolved itself and got forgotten by the health people).
Over the next 10 years, I dutifully did my injection every week (see the next post on what that was like). Even though it usually made me feel awful, I put this down to the expected ‘flu-like’ side effects. I sometimes wondered what I was doing to my poor thighs, but I figured that I had to put up with the short-term shit for the long-term gain.
I was also slowly, imperceptibly, becoming disabled, particularly in my ability to walk and my left arm/hand strength. It felt like I was getting all stiff on the inside. I was always cold, always had a blocked/runny nose, my sacrum got all ‘buzzy’ when I walked, I often had painful, twitchy legs at night…
But I had MS, right?, so I and everyone else expected me to be getting progressively worse. It was so insidious, nothing specific I would bother the doctor with. And MS can’t really be treated, so what was the point of medical intervention when there was nothing that anyone could do? (With MS, it’s all about managing the condition; steroids were the only thing they could ever give you, and thankfully I avoided those.) Also, I was a 20-something woman determinedly getting on with my life, not letting MS define me.
I saw the neurologist every year as part of the ‘cost-effectiveness trial’ for the Avonex. He was always running late and used to keep me waiting so long (like an hour or more) that by the time I finally got to see him, I’d be so fed up I’d say I was basically fine, or mention some very tiny thing that wasn’t really a problem, just so I hadn’t totally wasted my time.
I’ll give him some credit: he had power in the hospital and MS patients got any treatment they needed. Over the years I saw a speech therapist (no actual problem with my swallowing), a clinical psychologist (nothing wrong with my memory, though I am very clever!), a neurophysio (with lots of facial hair and a potbelly, and seemingly incredibly bored with his job).
But I was furious the time the neurologist referred me for a bone density scan without discussing it with me first. Like, why? You want I should spend an afternoon trudging to the hospital on the other side of the city and sit in a waiting room for hours for a test I don’t need?! I do have a life outside of this health condition, y’know.
Possibly the biggest regret of my life is mentioning that maybe I had a teeny weeny problem with needing to pee more often than I should. That began my experience with the incontinence services, which deserves its own post (coming up in a couple of days).
*I discover now that breaking my ankle and the ‘inner ear virus’ are more significant than I thought, but at the time, the events weren’t connected. I’ll come to this later…
** Optic neuritis just means inflammation of the optic nerve. It’s a very commonly associated with MS.