Living with nerve damage

When Health24 user Vicky found out she had spinal myoclonus, her life changed. This is her story:

What seemed like a normal evening turned out to be the night that would change my life. It was one of those nights where I had had too much fluid before climbing into bed so in the middle of the night I ended up getting up to relieve myself and that’s when it hit me.

"This is most probably going to be with me for the rest of my life."
 

The jerking in my abdominal area came out of nowhere. It was as if I was doing stomach crunches, the problem was that I could not make it stop. Standing, sitting, lying down... it did not matter what position I was in, it just wouldn’t stop. At first, I was told that it was all in my head and I was just having panic attacks but we decided to take matters into our own hands and get to the bottom of this. I saw a neurologist about a month after that first night. It's hard to think that I was diagnosed with spinal myoclonus almost 2 and a half years ago.

Myoclonus - a series of uncontrollable, involuntary muscle contractions - is a neurological symptom rather than a condition in itself. It can develop as a result of a brain or spine injury, stroke, infection or other disorder, and alongside epilepsy or other conditions affecting the nervous system, but in my case the cause is unknown. 

I’ve had 3 MRI scans, 2 EEGs, an EMG, 2 abdominal x-rays, a lumbar puncture and numerous blood tests and all of them have shown that I’m "normal". I’ve tried Epilim, Keppra, Rivotril, Urbanol and Lamictin to keep the jerks under control and I was very happy when the Epilim and Lamictin "cocktail" finally did the trick. In between all of this, there have been a number of hospital stays including one for suspected valproate toxicity (it was never proven because the levels were still within the normal limits) and another was a result of a post-lumbar puncture headache, which was finally sorted out with a blood patch (a procedure where blood is taken from a vein in the arm and injected into the spine to stop cerebrospinal fluid from escaping).

I’ve also developed a few speech problems, for example, I’ll get my words mixed up or I won’t remember what I want to say. While writing I might repeat words or phrases without even noticing until I proofread what I’ve written. (Most of these problems began after I started taking medication). I also suffer from fatigue and I’ve developed the memory of a goldfish. It’s frustrating as these are all non-specific symptoms and as all tests are still normal, there’s nothing that can be done about it.

When people ask me what’s wrong and I tell them that I have spinal myoclonus, I always get a funny look as they have no idea what I’m speaking about. When I explain that in plain simple English that I have uncontrollable jerks, they just brush it off and think it is nothing. If I’m having a bad time, I’ll struggle to do things that require fine co-ordinated movements. Sometimes it looks like I’m trying to pat thin air or that I have ants in my pants because my legs won’t stay still. There are times where I get a strong jerk in my abdomen and it feels as if I have been punched in the gut, which comes with the full sound effect. It can be a mission to fall asleep at times, as the jerks will come in little clusters, which makes lying still really difficult. I even had to add an extra year to my study "career" because of all of the hospital stays that this has caused.

This is most probably going to be with me for the rest of my life (my neurologist has said that it just disappears with some people but he doesn’t think it will in my case because I’ve tried so many different "cocktails" to try keep it under control) and I’ve come to terms with that. As a young adult, it’s a bit disheartening that I’m unable to go paint the town red with my friends or that sometimes I would rather stay at home so that no one can see my jerks or hear the sounds I make. However, I’m thankful that what I have is not life threatening or disabling and the only problem is that I’m a "jerk". I believe that life is like a rollercoaster ride, there are the ups and downs but no matter where a turn may take you, you should just sit back and enjoy the ride.

Read Vicky's Health24 Blog here.

Do you have a life-changing story to tell? E-mail us your story at community@health24.com

(Health24, September 2012)

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Neurological conditions