Lois’s story – MyAware
Lois has myasthenia gravis. Read her story below and learn more about the condition and how to get involved in Myasthenia Awareness Month in June 2024, by visiting Genetic Alliance UK member, MyAware’s website.
My name is Lois and I live together with my husband and 16-year-old daughter in a small town in the West of Scotland.
First symptoms
It was around 14 years ago when I first heard of myasthenia. I had an episode lasting 12-18 months of extremely blurred, double vision. During this episode I also had tiredness and weakness. I had been struggling to keep my eyes open, would fall asleep, couldn’t walk far and on one occasion my legs just went from underneath me. I couldn’t even do the dishes. The GP found my arms were particularly weak with little reflexes. I remember him being puzzled! It had been decided that I probably had M.E/chronic fatigue syndrome, a diagnosis I accepted.
However, when I went to the doctor with a feeling of a lump in my throat and generally feeling weaker, a young locum GP spoke to me about muscle weakness and asked me to come in the following day for blood tests for muscle problems, including ‘myasthenia’. When I arrived, the GP I saw refused to do the blood test apologising for the locum, saying ‘these sorts of problems are very unlikely and this test is an expensive test that should not have been ordered’. I went away feeling embarrassed and as the feeling on my throat did go away, I never asked again.
As time went by, my double vision would rear its head, but nothing that wearing prisms in my glasses didn’t fix. As for the chronic fatigue, I remained quite weak at times but again it was something that I managed as much as I could despite feeling desperately sad that I couldn’t always keep up with my young daughter. Over the next few years I managed to limp through university, starting my busy career as a social worker and a house move 500 miles away to Scotland.
New symptoms
It was around 2018 that I went on holiday to the Caribbean and caught a severe stomach bug. The bug led to a kidney infection, which in turn led to another bout of weakness which just became worse over time. Towards the end of Summer 2019 I was unable to walk upstairs, was short of breath and couldn’t swallow without choking. I lost my voice frequently, and my smile vanished. Due to my breathlessness, I was sent to hospital for tests. It was during my first time in hospital that I heard myasthenia gravis mentioned again, although to the surprise of everyone my tests for acetylcholine receptors came back negative. Terrifyingly, my voice changed almost overnight. I sounded as if I had suffered a stroke. A neurologist came to see me, very puzzled, stating he wondered if I just had severe M.E.
My husband was away at sea with the Royal Navy and my daughter had been with family friends for a few days, so desperate to get home I agreed even though I was sure this was different. Luckily a friend was with me before I was discharged and was alarmed at my weakness, especially at my voice being different and not being able to eat solid food. This is when things started to fall into place. The consultant asked for me to be admitted to the neurology ward in Glasgow for further testing. I agreed and finally felt that I was being heard. This wasn’t the end of the difficulty, however. My GP actually called me on the day of my admission, telling me that he thought my symptoms were psychosomatic. Another consultant on the ward felt I had symptoms of Functional Neurological Disorder and I overheard him telling the ophthalmologist that I was ‘malingering’.
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Some statistics about my life with myasthenia gravis
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5
appointments
The number of hospital appointments I attend in a year
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10
years
The time it took to receive my diagnosis
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20
tablets
How much medication I take daily
Hope and improvement
After extensive testing, including 3 electromyographys, I was sent home. I was told despite all of the debate over my case I likely had myasthenia, but they could not find what type it was. At a follow up clinic, I was prescribed some medication for myasthenia. This was ultimately life changing and served as the best test for whether or not I indeed had myasthenia because my response to my first dose of medication was amazing! Within half an hour I had my voice and speech back almost to normal. It was disappointing to feel it wear off, however my neurologist was delighted, and this seemed to be the golden ticket to confirm everyone’s suspicions. Unfortunately, the medication was short lived. I had another relapse not long after this and needed to start high dose steroids. This lasted throughout Covid-19. A miserable experience but necessary to halt a very severe flare up. I was then transferred to the care of the specialist myasthenia gravis team in Glasgow who have supported me through a couple of further, milder, relapses.
Currently I have a medication regime that works for me, a combination of steroid treatment, medication for myasthenia and immunosuppression medication. Aside from steroid related side effects, and the elements of trauma from my difficult diagnosis journey, I’m currently doing well from a myasthenia perspective. It’s a new normal, but one that is manageable and I can finally see a way through. I am back to work full-time in a busy social work job, I manage to keep as fit as I am able to and I feel hopeful about a future with myasthenia.
Lois