How Being Really Vulnerable Resulted in my Diagnosis

This post was updated on 24/03/18

This is the next instalment in The Journey series. To read the previous post in this series, click here

As the title suggests, my symptoms on that day were the worst they had been so far. I felt helpless, vulnerable and at the time I had no idea what was happening and why. Read on to see what happened and why I am actually really grateful it did and how it led to my diagnosis

Friday 5^th April 2013.

The Start of the Evening

As I am writing this retrospectively, I can’t remember what the initial triggers might have been. I do remember that they started about 6pm at the dinner table. It was a weekend that we had my (now) husband’s children so they were also there. However, I felt like the baby of the table. I had very little strength in my hands and there was no way I could use a knife and fork.

I may have been able to just about pick them up…maybe…but didn’t have the coordination or brain power to actually use them. So my G cut up my food and fed it to me, a forkful at a time. It was a struggle to support myself in the seat, hold my head up and my eyes open, but I could. I was what I affectionately like to call, in a rag doll state. I was also getting muscle tremors in my arms. Sometimes a judder, sometimes a more violent thud onto the table. There was no doubt it felt humiliating, of course it did. I didn’t want to feel or be that way. It felt out of my control and I had to simply use what little strength I had to eat my food.  

And so it continued…

After dinner, I rested. Or did my best to. Triggers started symptoms off again and I spent the whole time exhausted. Symptoms-mostly tremors of one sort or another- went on for hours, longer than it had before. From just before 9pm I was lying on the bed having full body shakes and spasms. Wow it was exhausting and terrifying, for me but also for my fiance to see. We were both concerned about how long the symptoms had gone on for, so G called NHS Direct, went through the various questions and from the answers G gave, they advised to take me to hospital. A came with us, as by now it was after 10pm and she was too young to be left. She was though, good to have around. She was mimicking my tremors, saying it looked like I was a one-man band with the way my feet were stamping and arms flinging around. It made us smile and meant the time in the waiting room was a little less daunting.

The first doctor -the Out of Hours GP- hadn’t seen anything like it so I got given a bed on a ward. One doctor after another came to see me, did various tests, consulted with colleagues and still didn’t know what was going on. I continued to have fatigue and muscle tremors and spasms. And by now it was 3am!

More tests were to be done in the morning and I needed to try and sleep.

The Next Morning

I had a CT scan. The result was I was told I have no large abnormality on the brain, which was a relief but still an opportunity for my lovely man to be cheeky! (“No large abnormality, but doesn’t mean her brain is normal, ha ha”) So although they couldn’t find a large abnormality(!) there was clearly something wrong so I was referred to a neurologist. And I am so grateful I was as this ensured I got a diagnosis

Reflection

Remembering this in order to write, is actually quite sad and upsetting; thinking back to when I felt so weak and couldn’t eat or dress myself. I’ve had to write up this blog post in two or three sessions as it was tiring me out, getting back into that head-space. But then it also gives me the strength to continue to write -which is therapy in itself. I want others to know there is hope,  there is a way and there is improvement.

Keep strong and keep positive xx