Living with Bob (Dysautonomia): SFEMG

You know your life has taken a weird twist when you're lying down in a room with two neurologists, a needle hanging out the side of your face, your son looking on, and you're all giggling as the machine measuring the health of your nerves, chucks out a long, and loud, fart noise. But this is where I am. So far down the rabbit hole at this point that I don't know if I'll ever climb out.

There is nothing elegant or glamorous about the world of medicine. If you had pride back at the start, by year 7 it's long gone. You become resigned to a life peppered with small clinic rooms, festy waiting rooms, telling complete strangers the most intimate details of your physical being, and your personal space, and body, being invaded again and again and again. You have to learn to laugh at it all or you lose a little part of yourself with each encounter. And really if you can't laugh at your farting nerves what can you laugh at?

This past week I was booked in for a single-fibre electromyography (SFEMG) at a local hospital. The idea of having a needle inserted in the face with no anaesthetic is not exactly something to which one looks forward. But it is one of those things that sometimes has to happen. Part of the diagnostic process involved with Myaesthenia Gravis (MG, my latest lovely) is not only clinical observation and blood tests (ie the anti-MuSK and anti-AChR antibodies), but also fun things like the SFEMG.

Even resigning myself to the process it's still one that leaves you a wee bit stressed. To counter my increasing levels of "Argggghhhh", I took the obvious path. I dressed brightly and wore my Dorothy shoes. As you do. Yep, I face my fears with colour and glitter. And photographs. On this occasion, my eldest son and budding photographer, came along to document the process.

I'll have to give it to the two neurologists. They didn't bat an eyelid when I rocked up in my sparkly shoes. And the response when I asked if they'd mind if my son took photos? "Sure. That's not the weirdest request we've had." The mind boggles.

After my inept attempts to explain what has been going on, my son found a photo of my face on my phone which showed the start of the weakness and ptosis. I can't stress enough how important it is to record pictures and videos of these symptoms. So much about our disorder is intermittent and 9 times out of 10 they wont be present on the day of our appointments. But this way they were able to see what happens and pull it apart bit by bit.

It's strange to see your photo being divided up into it's parts. A miss-match of contractions, weakness and ptosis. What I just see as facial blancmange, they saw as the diagnostic motherload. It also allowed them to decide exactly where to put the needle to get the biggest bang for the buck.

Of course this meant that I had to have the needle inserted, not near my eye like everyone else, but in the muscle next to my mouth aka "we rarely do it here, but after looking at your photos it seems the best spot." Apparently, this is also known as one of the more difficult areas.

Having said that, the neurologist in charge of the needle was lovely and encouraging. And you need the encouragement. Trying to purse your lips for 20mins whilst a needle is moved around to find the nerve fibres is damn hard. Add in that the muscle on the left side of my month twitches like crazy with the slightest strain, and trying to keep it still is a lesson in futility. Thank goodness for my meditation practice.

I "So Hummed" the hell out of that test.

It's strange to 'hear' your nerves. The crackles and fart noises are not what you expect, and the latter make it hard not to laugh. Given the giggles that also emerged from the two neurologists it would seem that the pleasure derived from a fart joke, transcends all levels of society.

After all that I was met with a series of unexpected questions about my family medical history. Followed by tests of my hand strength, ability to make and release fists and a testing of the reflex at the base of my thumbs. Both doctors asked the same questions and finished each other's sentences. It was clear that something key had come up on the monitor. Something that had lead them both to the same diagnostic destination. My least favourite word "interesting" was uttered and a groan may have escaped my lips. Then there was a request to do an additional SFEMG on the hand.

Of course by now my interest was peaked. I may have had a worried "hmmm..." moment, but I agreed.

Well, that's not fun.

The hand version hurt more than the face one. Especially when they decided to hit me on, or just next to, the needle with the neuro reflex hammer. I mean I know that it was necessary, but OW. There really needs to be a safe word with all these tests. It's still a bit bruised and tender 4 days later.

And at the end of all this I am hit with the whammy:

"We discovered some abnormalities that were totally unexpected."

Totally unexpected.

Totally fricken unexpected.

*sigh*

Apparently whatever these abnormalities might be, they are indicative of a neuromuscular disorder but they wouldn't tell me what. They wanted my regular neurologist to interpret them in line with my previous history. They did say they may have finally found my cause, and that is big news. But.

Poker faces, boys. You need to work on your poker faces.

It's weird that I had become accustomed to the idea that I have MG. Emotionally, I'd come to terms with the diagnosis, as it all seemed pretty clear. I'd read up. Tossed up my treatment options and hovered on the edge of an online support group. And here I am again adrift in the seas of the unknown. From their reaction it was clear that whatever came up was not indicative of MG. What it is indicative of is, well, who knows. Now I get to wait until December to find out.

Waiting. Waiting. Waiting.

I think I have spent the bulk of the last 7 years waiting.

I feel like the kid in the back of the car constantly asking "Are we there yet?"

Thank goodness for the power of glittery red shoes. It would seem they bring joy not only to me but complete strangers in an elevator, fellow patients in a waiting room and even silver-haired neurologists.

Michelle