‘Twitching, stuttering, leg stuff, mood swings. Hands. Sensory overload. Stuff.’
I’m rehearsing my list of complaints, shorter than the ever expanding list I give my GP, different to the list I’ve been repeating to gynaecology the last few months, a more polished version of the list I’ve given different neurology specialists over the years.
I’m a little more hopeful in this waiting room, partly due to having a lot more confidence in myself than I did at fifteen, part confidence in the neurology centre I’ve now been sent to. It seems by the time you’ve been referred here, you may not have a name for your condition but you know what you’re doing with it.
At this point I’ve spent the past thirteen years being referred to different specialists in different places, all of whom have come to the conclusion that that my various twitches, tics, flailing limbs and assorted nightmares have been due to my anxiety.
Last week I was cleared by gynaecology, given the standard ‘stress can affect us all in weird ways’ ramble, and sent back to my GP with a prescription that she seemed mildly horrified by, and resolved to write a strongly worded letter about back to the consultant, who it seemed barely glanced at my history.
‘We’re still waiting on your neurology referral, yes? See. These pills. They’re not significantly risky in themselves …but they are a significantly higher risk if you have a history of migraines. So let’s not do that.’
I remember the specialist who, after lecturing me on not trying hard enough with the CBT, put me on the pills that had me walking into traffic and cackling at nothing. He did warn that I might get fat. And that my twitch might move to my face, but other than that…
Other than that, madness.
So still bleeding I was told to hang in there until my neurology appointment, and sent off for a blood test. Monday morning I get a call from neurology offering a last minute appointment for the next day. Monday afternoon I get a call from the GP’s office asking me to book a second blood test.
Tuesday afternoon I meet the neurologist.
‘So, while it is all in your head, it’s obviously affecting you in a very real way, and that’s what we need to untangle.’
I’m slightly confused. Is that…did I win? Is that a result? I’m clutching a list of the recent horrifying ailments, bracing for a confrontation, psyching myself up to calmly insist that I know anxiety is a factor, the point is I would like it to stop manifesting the way it does, and be able to live my life.
Did he just make this point before I did?
Yes. Yes he did.
He said this after referring back to the letter sent by my GP, talking me through it, talking through my history, asking me for more detail on my history and what I’m worried about now. He looked at my legs. He walked me through various coordination tests. He asked more questions.
He assured me again that it was likely nothing physically wrong, but that the symptoms I’m experiencing are real and we can do something about them.
And then sent me for another blood test.
This morning I went to the second of the GP’s blood tests to have my arms scratched, stabbed, and punched into coughing up a last sample. I am a pin cushion. But I am getting somewhere.