Tuesday, 5 November 2013

Single-fibre electromyography (SFEMG): The waiting game continues.


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

(Thumbs Up for Awareness blue thumbs combined with Dorothy heals
 has to kick Dysautonomia's arse) 

This one's dedicated to MG who may or may not be part of my package.

5 comments:

  1. OH FFS! They're making you wait until DECEMBER when they KNOW the answer!? How typical. But also exciting that they HAVE answers. I really hope this answer has a treatment protocol and an optimistic prognosis, I really do. And thank you for this post - I needed it today. I've been ill the same amount of time as you (got sick at 15, am now 22) and I always relate to so much of what you say.

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  2. Even the seemingly most decent of medics appear to have a sadistic streak, and when it's our body why shouldn't we know what is going on if they know the answer! I'm still waiting for the results of all the tests I had recently, and it's almost as if they think "well if we don't rush to give them the results they won't need to push for the correct treatment and cause the practice more cost" (in the UK at least, don't know what the Aus system is like). I wish you an answer more quickly so that you can get the treatment that allows you to get up in your Dorothy's and dance to Chris Rea! xx

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  3. I love this post, and I so understand the feeling of having a needle poked into you and wiggled around... sigh. EMG's. I've had lots, though never an SFEMG. My dysautonomia is paired with some weird unknown that's causing neuropathy and atrophy, and I have started to wonder whether it's even worth it to find out what my unknown factor is. But your post made me happy, and I love your sparkly shoes. I am so dressing up for my next neurology visit :)

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  4. Wow that is exciting for you... finally a poke that may open new doors and treatment options for you. I guess our lives as lab rats for dysautonomia will pay off for other people...

    Your blog and your medical journeys remind me of the 90's movie "Pay It Forward". We are a like a big long chain of people helping each other bring sanity and happiness to the mystery world of Dysautonomia

    Thanks for loving kindness,


    Corrine

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  5. I know I haven't been around for many many months, not just here but anywhere on the internet really. I finally turn on my laptop to read this, a cliffhanger, you nearly know 'the cause'. Michelle its too much too much to take in, I am not sure how you cope and you do it with such tenacity, shining personality & sparkly shoes. I genuinely hope this is the beginning of answers and treatment and help and everything else my brain can't process. I too have ptosis waking up some days that side of my face dropped and my eye hanging so beautifully dropped, terrible nerve pain and pressure behind the eye. Intermittent episodes of thygesons keratisis combined with Post herpatic neuraligia. (Frankly I am still not sure this is correct). Along with the Ehlers Danlos life is interesting. I also hope this opens new doors and treatment options for you. I must say my long abscence from anything bloggy and visiting here has made me realise I should pay more attention. All I want for you is answers, life to be better, you feeling a whole lot better but please don't ever ever change for you to me are an inspiration. My cognitive functioning is haphazard so I hope the words in this comment make enough sense. Michelle the sentiment behind it all is just kindness towards you and thank you for taking time in keeping on writing here. You help me realise I am not alone drowning in a myriad of so many symptoms, questions etc and that there is a life worth living. Achelois x

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All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx