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 90th 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. After that, I embarked on a steroid reduction programme which seemingly was not affected by a fourth COVID vaccination in January 2022. It was though a bit depressing to realise that I wouldn’t meet the level of Prednisolone I was at in February 2021 for another year - if things went well.

They didn’t go well!

After all the care that I and my wife had taken to avoid COVID, I tested positive on 23 June 2022, as she did a few days later. I was entitled to the antiviral drugs available to those advised to shield, and I took up the option, taking the first dose on 25 June. Two days later I had to go to A&E having passed out at home for a short time. The likely cause was low blood pressure, possibly caused by the antivirals.

The 1st July 2022 was my 70th birthday and as we were still having to isolate, it was not the celebration we planned.

The following day, my voice worsened, and a few days later swallowing again became problematic. Once again, I had to increase my steroid intake and by mid-August, I had increased my Prednisolone dose to 40 mg and 10 mg on alternate days. It improved my situation although my voice started to sound a bit nasal again.

On 04 October 2022, I went for my flu vaccination but opted out of the COVID vaccine. I had agreed with the Neurology department that it would be sensible to wait for the Prednisolone dose to reduce to 10mg on alternate days before considering it again. This meant that I was taking more precautions (eg mask wearing) than much of the rest of the Scotland population through the winter but I considered it worthwhile.

I had a telephone consultation with my Neurologist in November 2022 and we agreed a programme of Prednisolone reduction. If carried out as planned, this would result in me reaching 10mg of Prednisolone on alternate days in early March 2023. During this period, I had regular contact with the Specialist Neurology Nurse checking on my condition.

The reduction programme went as planned and I reached the dose level of 10mg Prednisolone on alternate days on 08 March 2023. Since there was still no conclusive link between the COVID vaccine and a myasthenic crisis, I made the decision to have a fifth COVID vaccine on 15 March 2023. This time it was the Moderna brand, and it was hoped that this would have fewer side effects than the pFizer vaccines I had had before.

I was so optimistic that there had been no ill effects from the vaccine that, on 19 April 2023, I made the trip over to Forth Valley Royal Hospital for a Synacthen test to check on the functioning of my adrenal gland. This was necessary to see if I could reduce the Prednisolone dose further. Unfortunately, this all came to nothing because two days later I had the first signs of a new myasthenic crisis as I was having problems with both speech and swallowing.

This got progressively worse despite attempts to control it by increasing the Prednisolone dose. Perhaps we weren’t severe enough with this approach but on 20 May 2023 I had to present myself to A&E where I was admitted to ward A12 of Forth Valley Royal Hospital. I was unable to swallow my medicine or foods.

On previous occasions, I was treated with greatly increased doses of Prednisolone. This time after its apparent success in 2019, I was first treated with another course of Rituximab by intravenous infusion. Maybe we were all expecting too much but it did not have the quick beneficial effect that we were hoping for. The only real improvement happened when the Prednisolone dose was increased to 50mg daily. Even with this, I was still in hospital for 40 days, significantly longer than my two previous stays.

During this time, I was given my medication by NG tube. Some of the medication could not be crushed and therefore had to be stopped until I could take it orally again. I was also given liquid food dispatched by pump through the NG tube. Towards the latter part of my stay, I was doing this myself, and it was on this basis that I was allowed home just before my birthday. I had still not recovered the full ability to swallow but the medical teams concluded that my recovery would be aided if I was at home. I think it also helped that my son who is an NHS nurse lives close by and interceded on my behalf.

The hospital staff were all very concerned for my welfare and I don’t think I could have been in a better place. I was allowed out for walks in the local woods. Since the time I was in hospital coincided with the best part of the summer, this definitely helped my state of mind. But above all I was allowed out on a couple of evening passes. My daughter collected me from Stirling so that I could see my granddaughter performing, and my son took me to Murrayfield to see Bruce Springsteen. Wonderful!

When I got home, my eating improved quite significantly and I was able to stop the liquid feed and remove the tube by the end of July 2023. At that time, I was offered the Shingles vaccine. There appeared some possible conflict between it and Rituximab but in the end I chose to have the vaccine. There have been no side effects. I did though ensure I was given the non-live version. This requires a second booster in 2024.

On the last day of July, I saw my Neurologist in person and we discussed the way forward. I found it hugely complimentary that in his letter to my GP he said ‘. . . he (Paul) is well, with a gradual reduction in his dose of steroids. He has done this before so I have left him to manage the process.’ That programme should get me back to 10 mg on alternate days by the end of the year. I do though know that if problems arise, both he and his nursing team are there if I need any help or advice.

There have been other medical problems which have affected me during this time. The main one has been that of diabetes. It is generally accepted that this has been brought about by the steroids. However, it came to the fore by regular HbA1c testing by my GP, and Blood Glucose Monitoring as a matter of course in the hospital. As a result I am monitoring my own blood twice a day and keeping greater checks on what I eat. However, I remain convinced that the root cause is the steroids. If I reduce them, I hope the diabetic effect will also reduce.

I have problems with urination but the situation is being monitored by the urology department at Monklands hospital. My medication was disrupted while in hospital this year because one of them could not be given via the NG tube. I know that I do not have full control of my urination but I am happy with the attention that is being paid to it.

So here I am in October 2023 with much the same concerns as before. I have been offered the flu and COVID vaccinations. My Prednisolone reduction programme is on track but I still have some weeks to go before I get down to 10mg on alternate days. So I’ll take the flu but not the COVID. That will mean another round of Celtic Connections concerts wearing a mask but so be it. For now there is no definitive correlation between my myasthenic flare-ups or crises and vaccination. It may all just be coincidence. Until we know any better, I will have to decide when or whether to have the COVID jab. After what I have been through this summer, it will not be an easy decision.

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 first two stays in hospital, my neurology nurse asked if he could bring some medical students to see me and I readily agreed. During the third stay this year, I took the initiative. Students from the University of Stirling regularly worked in the ward as part of their course. Each one that I encountered was quizzed on their knowledge of myasthenia, and pointed in the direction of the Myaware website for more information.

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. When COVID intervened, the sessions continued online. I have continued to take part each year, providing an update on my condition and answering any questions that arise. 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. 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 three 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. My wife and I are settled in our 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.

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