I passed the days waiting for my neurologist appointment to come around by keeping busy. When I was awake, at least.
Being someone who was accustomed to busyness most of the time, now without the gift of sight, meant getting creative. I decided to organise a demo for International Day to End Violence Against Women/White Ribbon Day, the 25th November. I guessed that it wouldn’t take too much effort, just some enthused social media activity and persuading some feminist group members and supporters to get involved.
I arranged a placard painting party, and we whipped up a few, as well as some interest in the event. It fleetingly crossed my mind that staging a public event the day after my hospital appointment might not be my finest idea. But I really disliked cancelling plans so carried on regardless.
I was convinced by this point that I must have MS, and told my feminist friends as much. I had read up a bit, decided my symptoms fit, and prepared myself to hear that news.
D-day arrived. It was actually only 19 days since it had all begun, but felt like an eternity. Endless days of impatiently waiting to wake up and be well. More mornings than I wanted to think about, of hoping the dizziness wouldn’t creep up on me that day, wishing my vision would return.
The neurologist introduced himself and we sat down. I braced myself to hear his declaration of my fate. I was going to live out the rest of my life with Multiple Sclerosis, right? I’d been hoping for a less serious version of it; I’d done my research, I could live with that.
Dr D looked at his screen. He looked at me,
Your MRI scan is clear. There are no lesions, no sign of any abnormalities at all.
I stared at him in confusion. I was so sure. But what did that mean. I knew there was absolutely, definitely something wrong with me.
Lke many women, I had experiences of being led to believe by medical staff that I was just making a fuss, being neurotic, over-dramatising my symptoms. More than once. Take this particular illness for instance. On being seen at A&E that first day, I was shooed away with a dismissive bottle of eye drops. In fact, the triage nurse had said to my husband when he told her he didn’t agree with her snap assessment that I had a stye forming;
Of course, what do I know, I’ve only had 30 years’ nursing experience!
So I braced myself again. This time to assert my belief that I thought I really WAS ill.
Dr D said he needed to examine me. He got me to hold my gaze upwards, staring, or trying to stare, at his finger as he held it somewhere above me. Within seconds my already drooping eyelid started to close. I couldn’t open it no matter how much I tried. He apologised, told me it was necessary and that he’d explain everything very soon.
After some reflex tests, checking if I could hold my arms up and resist him pushing them down, and that I had good hand-eye coordination, he did the gaze holding test again. By this time my eye was staying stubbornly shut.
I think you have Myasthenia Gravis. All your symptoms fit.
Has nobody spoken to you about this yet? That it was a possibility?
I had what?
Now, if you’ve found this blog you’ve probably heard of it or you wouldn’t have stumbled across my musings. But I had not, at that point, ever heard of this obscure condition.
Dr D said it was a rare, chronic autoimmune neuromuscular disease. And he was 90% certain it was what was wrong with me. It was caused by the immune system producing antibodies that interfered with the transmission of messages from the brain, and prevented them getting from the nerve endings to the voluntary muscles.
Me: Can we find out for sure? I like certainty!
Well, it’s not always that simple the doc told me. We eliminated other conditions. The head MRI eliminated MS, a stroke or a tumour. I needed to have a blood test. It had to be sent off to a specialist lab because they were the only people in the UK who tested for these antibodies. But not every myasthenic would have the antibodies show up on tests. So we also needed some nerve conduction tests. Between all of those we might reach a positive diagnosis.
My husband wanted to know…
Is it curable?
Yes, says Dr D.
This could be treated, there were medications that could control myasthenia. Unfortunately I couldn’t begin taking any of them until the tests were completed. The drugs could interfere with the results. I needed to be aware that myasthenia could affect all voluntary muscles including those responsible for breathing and swallowing. If I started to have any issues swallowing or became breathless, I was to contact Dr D’s secretary and go to hospital immediately.
I was completely shellshocked. I probably had a disease I had never heard of. I thought I was going to get answers. Now, more tests. More waiting. And much more likely that my sight wasn’t going to return on it’s own, without intervention at least.
I needed to know more. As we said goodbye to the man I would soon start to call ‘my neurologist’, I was eager to rest my drooping eye so I could do what everyone says you should never do in a situation like this.
Consult Professor Google.