My Story – ‘you don’t look sick’

img_1355-1This was originally one of my first blogs, but as it’s officially Rare Diseases Day’ today, I thought I’d republish and update this one to help raise awareness of myasthenia Gravis (or MG). I’ve had a lot of new friends on social media since I first posted this, so I thought it wouldn’t hurt to share more about my story and how it all started and what exactly it is that I have.

The picture just shows how different my face can look from one day to the next. Weird.

Here’s my story.

I’m not entirely sure when my MG started.

I had strange symptoms for a number of years, such as tiredness/ fatigue/ heaviness in my limbs, but I’d been working shifts and put it down to not sleeping well and early starts/ late finishes. Over the course of a few years, I’d changed jobs and hated the role I was in, so again assumed the tiredness was stress related. I got double vision when tiredness took hold and seemed to be getting particularly clumsy – dropping crockery and stumbling when walking. It wasn’t until I had a femoral DVT and pulmonary embolism in 2002/second DVT in 2003 that things started to become apparent something was far from right about my health.

I struggled to regain any standard of health following the blood clots. I was constantly so tired it would leave me tearful and just getting out of bed took all the willpower I had. I went off work long-term sick. The double vision became a permanent factor and my speech would become slurred towards late afternoon. I notice my left leg would drag as I walked, but I assumed this was related to my leg being so damaged by the DVT. My husband noticed one day at the gym that when I was walking on the treadmill, my left foot would ‘slap’ as it hit the floor.

One particular occasion during this time stands out to me. I was shopping in a local store and carrying a basket. My vision was being particularly bad and my spacial awareness was affected. This caused me to misjudge a gap between a column in between the end of an aisle and the back wall shelving and caused me to bounce into a display case. I stumbled and fell to the floor as my legs were too weak to stop me and my arms wouldn’t co-operate. My speech was slurred as I asked for help and two elderly ladies walked by and “tutted” at me, muttering how appalling it was that I was drunk so early on in the day. I was mortified. I couldn’t get up and kept dropping my shopping because I’d lost coordination of every one of my limbs and the stress of the situation added to the symptoms. Needless to say, I left the shop at that point, completely humiliated and in tears.

I was very fortunate. My GP had a personal friend with MG, so he thought he recognised the symptoms immediately and referred me to specialists in Birmingham. Then began some of the most awful tests I think I’ve ever experienced!

My CT scan revealed enlarged thymoma, which was actually a relief as all of the other tests came back as fairly inconclusive. These tests include Single-fibre EMG, which is the most sensitive electrical test for detecting disruption of the signal between the nerve ending and the muscle membrane. It involved taking a recording from a very small needle in one of the muscles around the eye, cheek and forehead and in my forearm and hands (I’ve since had this done again). One of the other tests was an edrophonium test. This involves having an injection of a type of medication which temporarily increases the amount of acetylcholine around the muscle and produces a sudden but temporary improvement in muscle power. My consultant was fairly ‘old school’ and he commented that “if this was 15 years ago, we wouldn’t have had access to all these tests and I’d be making my diagnosis on your symptoms and my knowledge” – so he prescribe mestinon as a trial.

One month later, after nearly two years of not working, I was back in the workplace in a new job! My symptoms were fantastically controlled by the Mestinon, with just a slight drooping in my eyelids if I got too tired, but other than that, no one would know I was ill. This remained the same up until point of remission during my first pregnancy. Unfortunately, following emergency surgery in 2014, symptoms started to reappear (I had been warned this would be the case as general anaesthetic can have that effect on mg). Symptoms were well controlled with mestinon and I went in to get my body fit enough that I was walking 5 miles, 3 times a week and climbed Snowdon to raise money for Myaware, the uk charity that supports people with MG.

Following a miscarriage in December 2015, my mg flared. My eye droop returned, my arm weakness came back and walking became more difficult. I could only manage walking to school and back. I got re-referred to my neurologist who decided we needed to perform a follow up ct scan as he had thought my thymoma had been removed over a decade earlier (it hadn’t been). The ct scan would reveal if I needed to have an operation called a Thymectomy to remove the thymoma, but just as my appointment came through, I discovered I was pregnant – which was wonderful! I was really hoping to go back into remission again. Alas, this was not to be! MG decidedit was not going to play fair. My symptoms of fatigue returned with a vengeance, walking had to stop completely by October 2016 due to my legs misbehaving (and I developed SPD, a really painful pelvic issue that is fairly common in pregnancy) and breathlessness. It’s the breathlessness I find hardest to cope with. Even climbing the stairs is difficult and I have to rest at the top, which is pretty ridiculous really.

My hope is that once baby is here (less than 6 weeks to go!), my hormones will sort themselves out and I’ll get back to being ‘me’ again. Here’s hoping.

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28th February is Rare Disease Day. I’d love to hear from you if you, or someone you love is affected by a rare disease. Please get in touch and share your story amymillard@flp.com

 

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