More tests, and not even the last because Dr D mentioned a CT scan too.
My mother in law offered to drive me to hospital as my husband couldn’t get any more time off work. I was still unable to go anywhere alone because my diplopia (double vision) and dizziness were so bad it wasn’t safe for me to cross roads. It was also quite disorienting to be around lots of people, and I had literally bumped into one or two due to being unable to gauge distance and which of the double version of them was the real one!
I had a follow up appointment with the ophthalmologist consultant. After another array of checks on the movement of my eyes, and the fixed gaze fatigue test that I was coming to dread, more dilating drops were put in. They stung my already gritty eyes viciously. The consultant checked me over. The verdict; MG had started affecting both my eyes.
Back at reception I asked directions to the neurophysiology department. It was in the depths of the old part of the hospital, an area I’d never visited. I made my way there slowly.
I didn’t think they had many patients there, I was alone in the waiting room. The doctor called me through and directed me to a comfortable looking armchair next to a machine with a screen. He explained the procedure. He would start with the EMG with a series of shocks given in sharp repetitive bursts. He also apologised. This was going to be unpleasant.
Starting on my hand, the doctor tested for the nerve ending location with tiny shocks. Then came the big shocks, hard and fast. My fingers twitched in response. He moved up to my wrist, repeated the shocks, then my elbow, finally my shoulder.
Moving on to my face, he shocked around my eye. I’d imagined this would be the most uncomfortable but it wasn’t as painful as having my hand, and especially my elbow shocked.
Now for the needle. I knew I was going to hate this. Did anyone like having needles stuck into them?!
This test also started with my hand. He inserted the needle on the end of the testing device into the fleshy part of my palm. Twiddling it gently, the machine started to transmit sounds from my nerve endings. They sounded echoey, sort of underwater swishing sounds. I had to make small movements of my fingers so he could ‘hear’ the nerves trying to talk to my muscles. Again he moved up to my wrist, elbow then shoulder. When he placed the needle into the flesh close to the bone of my elbow to connect to the nerve, it really hurt. I could almost feel the bruises forming.
Finally it was time to test my eye. The idea of having a needle inserted into my face so close to my eyeball nauseated me. I took deep breaths and then held very still. The doctor pressed the point of the needle into the skin mere millimetres away from my eye and told me to keep my gaze still and not to blink. He slowly tweaked and twiddled it searching for the nerve ending. I heard the crackling of electrical messages trying to reach the nerve junctions. He watched the screen. It probably lasted a few minutes but seemed to stretch on for an age. A thought popped into my mind about how people say they’d rather stick pins in their eyes than do something they imagine to be dreadful. I didn’t think I would ever say that again.
The neurophysiologist finished his work and I exhaled heavily. I didn’t realise I’d been holding my breath between shallow intakes of air, until then.
He asked me if I had a diagnosis yet, and I told him I did. He said he would have been able to tell it was myasthenia from these tests alone. There was significant weakness of the muscles around my eye. But then he said there was definite weakness in my hand and arm.
This should be news. I hadn’t noticed weakness there. But, I had dropped things a couple of times, and that was unlike me. I wasn’t usually clumsy at all.
The significance of this started to dawn on me almost immediately. Dr D had mentioned that MG can sometimes be just ocular. The only way to know that was if it didn’t progress in the first 2 years. This was the case for between 10-20% of myasthenics who began with eye weakness.
My occular myasthenia symptoms started less than 6 weeks ago. Which meant it was already progressing. It also meant I had generalised MG. More dangerous. More debilitating. More parts of my body that might not work properly.
More more more.
On my way home in the car I explained all this to my husband over the phone, parroting what the doctors had told me. I was eager to get back and take my first Mestinon dose. I yearned to see again! This distracted me from what was quite a devastating development.
At home I swallowed what would be the first of copious quantities of medications, and took myself to bed to rest. I had a dull headache, and wasn’t sure if it was due to the tests, anxiety or lack of sleep.
I supposed I didn’t really allow myself to process the morning’s events. It was just too much, and I was more able to cope by planning ahead, working out how I could adapt to the constraints on my physical ability to do everything I used to do. I also had faith in the pills.
The meds would fix me. Right?