Two weeks ago, I received a call and it was about the appointment that I had been waiting for for four months. So since then, I had been looking forward to the 29th of June. The more extensive nerve conduction and single-fibre EMG tests would be done.
29 June 2017 — The day went on as usual… looking after the boys, trying to organise and tidy up the house, etc.. My husband left his work at 1pm to drive me to hospital and to take the boys to the museum while I had to undergo the tests.
I arrived at the Neurophysiology reception 10 minutes before my appointment. I saw a few neurologists walking around. It felt good when they stopped to greet me and to ask how I’ve been… and told me that they’ve been looking forward to give me the final diagnosis. I’ve been hoping for that too.
I had to wait at the reception area for only five minutes. The very last neurologist whom I saw during my last day in the Neurology ward six months ago was the one who led me to the testing room. He examined me. The weakness that I thought was completely gone was still there. “You’re definitely stronger now but you’re still weak.” That’s what he said.
Then he explained to me about the procedure, which could last for 90 minutes. He then went out to call the neurologist who’s a specialist in conducting the tests.
The specialist entered the room. I was nervous but I was feeling positive too. I was glad when he told me that he thought they wouldn’t have to do the nerve conduction test since they thought that the problem is not on my nerves but on my neuromuscular junctions (I’m not sure what that meant but based on the name…it might be the connection between my nerves and muscles). Then he proceeded to examining me in the same way that I was examined several minutes ago and he started the SFEMG test.
He asked me to lie down and began to insert the needle into my right arm. Then I began to feel the “electric shocks” and heard those “tock…tock…tock…tock…tock…” from the computer. It lasted for almost 20 minutes. Then he transferred the needle just a few centimetres away from the first one. It lasted for around 10 minutes. Then he removed the needle. He told me that they seemed to have enough data and excused themselves to talk about the result. They went out for five minutes.
While they were out, I was thinking that they had the answer. I was wrong.
I was told that there were times when the number of jitters per microsecond was higher than the normal range but the mean was within the normal range so they had to do the same thing again but it would be on top of my right eyebrow. Yes, they had to insert the needle on top of my right eyebrow (which became a bit swollen after).
It lasted for almost 20 minutes. He said we’re done. He said I could already go anytime and that the main neurologist who’s been assigned to me would call me for follow-up. I was dying to hear about the result so I asked him about it. He said “We found abnormalities in the result and I would further look at it then I’ll send my report to Dr. R. He will then set a schedule for a follow-up appointment with you. But if you notice that your symptoms are getting worse like you’d feel you’re getting weaker again or your double vision worsens or your eyelids are drooping more or your swallowing becomes difficult like last time, you need to let us know right away so we can already put you under medications.”
The answer was not clear to me because there was no direct answer but I respect how he did it. Perhaps my main neurologist should really be the one to discuss about the result to me.
For now, I simply have to wait for the next call from them and hope that I’ll continue to get better without the need for any medications (because I have never been good at taking medicines).
Yes, the waiting game and the saga continue… 😔😔😔