My Life with Myasthenia

I first crossed swords with myasthenia on Friday 10 April 2015 although I didn’t know it at the time. It was supposed to be a normal day at work, and the last one for a while as I was on holiday the following week. I had a one-to-one training session with a colleague on a particular type of software that we used for planning construction projects. I’m not a particularly garrulous person but this involved my doing a lot of talking. What worried me was that as the day went on I found it more and more difficult to get my words out. Somehow I managed to get through it all but I had no idea what was going on. I had noticed a few similar occasions previously but not to the extent of that day. So what to do? The holiday was planned so that I could take the family to my mother’s home where we were going to celebrate her 90^th birthday. I felt it couldn’t be missed so instead of phoning my GP, we headed south.

On the journey, my voice occasionally broke down much to the amusement of my children. The situation worsened to the extent that I made an emergency appointment with my mother’s GP. With my condition being very variable, I hoped that the symptoms would show themselves and they duly did. After considering my condition the doctor gave me a letter for my own GP, and asked me if I wanted to know his assessment. I said ‘yes’ and he hit me with his view that I had Motor Neurone Disease (MND). I don’t think I had expected that but of more concern at that time was that he said I shouldn’t drive. Fortunately my eldest daughter was with us and she took over driving duties.

After the family celebrations we returned home to Stirling and first thing on the Monday, I phoned my GP and got an emergency appointment that day. When I gave him the doctor’s letter, he was at best sceptical that I had MND. However, he referred me to the neurology department at Forth Valley Royal Hospital. I was then diagnosed with myasthenia gravis (MG) on 08 May 2015. My immediate reaction was ‘what is myasthenia gravis?’. I was given some information and had the diagnosis confirmed after more tests. I consider myself fortunate that it was not MND which would have impacted on my life to a much greater extent, and also that I was diagnosed within a month of serious symptoms. For some, it has taken months if not years to get a diagnosis.

The only immediate downside was that I was due to retire two months later and my perception was that this was going to interfere with my plans to travel.

As you do, I googled ‘myasthenia gravis’, and that provided me with my introduction to myaware. In those days, we had regular meet-ups arranged by the myaware Regional Organiser for Scotland. While the website is an excellent source of information, these gatherings were invaluable in meeting up with others with the condition. The opportunity to share experiences is something to be cherished - you know you are not alone.

I was prescribed Pyridostigmine (Mestinon) tablets and still remember the first time I took the tablets. There was an immediate improvement in my voice and I thought this condition was going to be easy to control. However, I quickly learnt that there is no consistency in treatments for MG. Some work; some don’t. And after that first lift, I never really felt that Mestinon gave me any real benefit.

In August 2015 and after retiring, I was demolishing a shed in my garden so that a new replacement could be erected. I completed the job but I wasn’t feeling up to much and had problems with my swallowing. I probably wouldn’t have done anything about it but my wife, not for the first time, was more concerned about me. She thought I had a chest infection and spoke to NHS 24. Before I knew it, an ambulance was at the front door and whisked me off to the hospital where I was admitted. I had my first experience of IVIG, and was given liquid food through an NG tube. I also had my first encounter with Prednisolone (steroid) and it is this medication that has been the mainstay of my coping with MG.

I returned home 19 days later, just in time to attend the launch of my wife’s second poetry collection. I think I was lucky with my stay in hospital. I was still mobile so able to go out for walks, and the hospital WiFi was freely available to patients. Without that, I would have found my stay much more difficult.

In December 2015, I started on Azathioprine, another staple in the medicines used to treat MG. It works for some, but again it didn’t seem to work for me. I stuck with it for some years but in 2019, it was phased out and I reverted to dependency on Prednisolone.

In March 2017, I had cataract operations in both eyes. These were not directly related to my MG but the cataracts probably formed as a side effect of taking Prednisolone. I had excellent out-patient care at Falkirk Community Hospital, and I had an unexpected benefit. I had been very short-sighted since childhood but now I had distance vision which meant I could go cycling without wearing my glasses.

I’ve had a number of other treatments including more IVIG sessions, some of which seemed to provide a lasting benefit, others which seemed to give little if any help. Two sessions in January 2018 did give me a boost and that summer was good. However in August, my voice started to go again, in September my voice and swallowing were giving me problems (and my mother died), and in October I had some more IVIG but with no apparent benefits.

In November, the situation worsened to the extent that I emailed the Professor who diagnosed me to explain the situation. Such is his commitment to his patients that he emailed me by return from his holiday in Australia, and advised me to go to A&E. I wrote out a description of my condition to take with me because I wasn’t confident that I would be able to speak. I was somewhat disconcerted that the Triage nurse hadn’t heard of MG but that was not the case with the doctor who saw me. I was admitted on 22 November and treated again with increased Prednisolone and feeding by NG tube. I was confident enough to take on the feeding myself this time having worked out how use the pump from an online manual.

I was discharged after 12 days with Prednisolone set at 50 mg per day and a programme to reduce it. However, this level of steroid came at a cost as I was diagnosed with Type 2 Diabetes. Given my lifestyle, it is thought likely that this is another unfortunate side effect of taking steroids.

In March 2019, I was given the opportunity to have a course of Rituximab by intravenous infusion. This had been adopted as a relatively new treatment for MG and it was hoped it would give some six months’ relief from symptoms. As it turned out, that relief lasted for much longer.

COVID-19 hit in the Spring of 2020 and affected us all. I was told that I was on the shielding list because I was immunosuppressed from taking Prednisolone. In consultation with my wife, I took the decision that I was not going to stay at home all the time. While I was careful to avoid contact with others, I went out on my bike every day for the allowed one-hour of exercise. I’m sure this helped me to get through the lockdown. And all the time I was reducing my Prednisolone dose. By the end of the year I was down to 4 mg on alternate days and realistically looking at the prospect of coming off steroids altogether.

In February 2021, I had my first pFizer vaccine to provide some protection against COVID. Two weeks later, my voice started deteriorating. Was this coincidence or not? There is no way of telling but it didn’t stop me from having my second vaccine eight weeks after the first. In the meantime, my steroid dose was increased to 10 mg on alternate days. This seemed to keep things in check until October during which time we had moved house, advisedly one of life’s most stressful times. About a week after my third pFizer vaccine, my speech and swallowing started to be problematic. This worsened and the steroid dose was increased again, peaking at 40 / 30 mg on alternate days. Since then, I have embarked on a steroid reduction programme which seemingly was not affected by a fourth COVID vaccination in January 2022. It is though a bit depressing to realise that I’m not going to meet the level of Prednisolone I was at in February 2021 for another year - if things go well.

Since I have had MG, I have been conscious that it is a minority condition. As the Myaware website reminds us, around 12,000 people in the UK are living with myasthenia. I have been keen to take whatever opportunity was provided to increase knowledge of it especially in the medical profession. When I first met the Professor who diagnosed me, he had a student with him and I was happy for her to sit in on my diagnosis. During my two stays in hospital, my neurology nurse asked if he could bring some medical students to see me and I readily agreed.

In 2018, I was asked if I would be interested in being a volunteer patient for medical students at St Andrews. Their course included a session on myasthenia and they were looking for people with the condition. I was happy to agree especially as it gave me a chance to visit one of my favourite seaside towns. Hopefully the students will go on to become GPs and may be the ones who will be looking after us. Anything that improves the general awareness of myasthenia is worthwhile, and I have repeated my involvement in the following three years. In my future encounters with the NHS in Scotland, I hope never to meet anyone again who has never heard of myasthenia.

So that’s where I am now. I consider myself fortunate that despite two spells in hospital, MG has not affected me as badly as some with the condition. I have had, and continue to have, excellent care from my neurology team especially when I’ve needed it most. I and my wife have managed somehow to avoid the COVID virus - so far. We are almost settled in a new home. I have bought an e-bike and enjoy being able to get out on it when I can. We are closer to family, and grandparental duties have increased but it is fun to have the grandchildren nearby. So life has its problems with myasthenia, but it can be good.