I thought it was about time I gave you a little update on my health. Nothing has changed but I wanted to share my experience with the tests I had a week ago.
I had an appointment with my new neurologist at the end of May. I wished she listened and was awesome, and she was. She sent me for blood tests, eleven vials – which wasn’t fun, my arm was numb for ages afterwards. And she also mentioned EMG testing. At the time I didn’t know what that was but I told her that I would let them do any testing on me they wanted as I needed answers.
My health has only got worse since I last updated. I am sleeping even more than I was, last week I was awake for only half a day. My breathing is severely affected, I am now using an inhaler as I was taken into A&E at 11pm two weeks ago due to aspirating on food. Often when I’m talking I find it hard to breathe. I am also very weak; my muscles don’t seem to want to work and when they do, they don’t for long.
Anyway, I was sent for electromyography (EMG) tests last week – they assess the nerve and muscle function by sending electric shocks to the nerves and analysing how the muscles react. They’re commonly known as nerve conduction tests, and I have had that before. The doctor put small sensors on various parts of my hand and then sent shocks of various intensities. He then removed the sensors and put them on my face, again sending small shocks. This was fine, it didn’t hurt at all. I have my TENS machine shock me at a higher intensity!
Then the doctor started the SFEMG (small fibre electromyography) where small needles where inserted into the muscles in my hands, and various places up my arms. The first needle he inserted into the fleshy part of my hand under my thumb and he did it so quickly, it was like he was throwing a dart. The initial insertion was no worse than a scratch. Then tiny shocks were given to make my thumb contract. This didn’t hurt, it just felt strange. The doctor then asked me to make a fist, and push against his hand.
Then the needle was moved just under my elbow and that was painful but bearable. Again, the shocks were sent. Finally the needle was moved into my bicep. The needle going in there hurt but once it was in place, it wasn’t too bad.
The test took 45 minutes to perform and the doctor told me I would have to go back that weekend for more. He informed me that there was not enough time for him to do anymore tests and he needed to do the SFEMG test to my face.
Needles to the face. My face.
I wasn’t happy about it but I knew it wouldn’t be happening if it wasn’t necessary.
I received a phone call as I got home to inform me that my follow-up would be in three days time, on the Sunday.
I went to my initial appointment in the outfit above. I don’t go out often so thought I’d dress up for that appointment. I even kept my hat on during the tests.
But Sunday morning arrived and I was flaring, I couldn’t lift my head up, I couldn’t move without the assistance of my Mum and Pops (who arrived for a visit the day before), I couldn’t speak – Mum told me later that day that she couldn’t understand a word I’d said to her and was nodding along to make me feel heard.
Mum dressed me and took me to the car in my transit wheelchair that I had got the week before from Wheelchair Services. When I’m having one of these neurologist flares, I am unable to use my power chair as I can’t concentrate enough, I can’t keep my eyes open, and it’s just not safe.
We got to the hospital and was informed mum would have to stay in the waiting room as the testing room was really small, and it was, it was tiny.
I was helped out of my wheelchair by two nurses and onto a bed. The doctor explained everything that was about to happen and said the test should take around half an hour.
After cleaning my face, she inserted a needle into my cheek and stuck tape around it as that was staying in for the whole test. That one didn’t hurt but it was uncomfortable. I quickly forgot about it though as she placed one next to my eyebrow which caused a pain I’d never felt before. Then came the shocks of various intensities. Then another needle was placed above my eyebrow. This one she moved around, dug in further etc. It was horrendous. I told her it was really painful so it was removed for a second, and replaced to a different spot that still hurt but not quite as much.
The needles were pushed in and around my face muscles, with awful shocks that had my face and eyelids twitching, and muscle biopsies were taken. I lay there feeling like she was etching something into my skull, I had never felt pain like it.
After 35 minutes of my face being stabbed, the needles were removed, finally! The needle in my face had caused me to bleed quite a lot and the doctor gave me a new face mask as mine was covered in blood.
I was helped back into my wheelchair and taken out to my mum. The nurse kept telling me how amazingly well I had done but I felt like I’d been in a ring with Mike Tyson and I was just glad it was over.
My face was swollen and the bruising came out immediately. My hEDS skin bruises so easily so I knew I was going to look a bit of a mess. I couldn’t really speak, move my face or raise my eyebrows as my face was so tender. The swelling went down after a day and my function, or rather, what crappy function I had previously, restored.
I’ve had a lot of procedures and surgeries but that, in my face, was the worst. I hope I never need it again and I hope it gives us some answers as to what is wrong with me.
I’ve booked to see my neurologist privately as the NHS wait time was ridiculous, so I see her for my results on 2nd September. Not long now!
Wish me luck.