Being diagnosed with myasthenia gravis can feel overwhelming. The symptoms, uncertainty and treatment options can all be daunting. Yet, each journey is unique, and there is hope and strategies to help you live well. Amanda and Bernie share their experiences – decades apart – reflecting on diagnosis, treatment and what they’ve learnt along the way.
Living with myasthenia gravis: advice from two community members
Amanda – “The treatment options are very different now to when I was diagnosed”
My diagnosis was unusually fast. From my first symptom in October 1991, I was diagnosed in January 1992. I’d gone on holiday to Mexico in September, and by October, I started having trouble chewing and swallowing.
I was already under a neurologist because I’d had seizures since I was nine, which I think is why I was diagnosed so quickly. When my swallowing didn’t improve, I saw him in December. I had two lots of blood tests done and each one was either lost or broken, so had to keep having them redone. I was deteriorating the whole time; by the time I was diagnosed with myasthenia gravis in January, I had gone from eight stone ten to six and a half stone. I simply couldn’t eat and was having to live off just fluids.
Once the doctors knew what it was, they started more specific tests. My antibodies were positive. A CT scan showed no thymoma, and my thymus wasn’t enlarged, but by March, they decided to remove it due to my deterioration. I had my thymectomy at the National Hospital for Neurology and Neurosurgery in Queen Square, London. They even brought in a cardiothoracic surgeon from another trust to do it. Back then understanding of the condition still wasn’t great.
The surgery picked me up briefly, but not for long. By May, I was extremely poorly and put on high-dose steroids and azathioprine. It took two years of working out medications before I could begin to live again.
Support now is much more easily accessible
The world was different when I was diagnosed; there was no Google or internet. My mum found a local support group through what was then the Myasthenia Gravis Association. I walked into a ‘pop-in parlour’ at 26 years old and everyone there was over 70. I came out thinking my life was over. I didn’t find reassurance for at least a year, maybe longer. In the end, I found my way on my own, with my clinicians and family. Not having the internet protected me in a way, as I didn’t automatically think doom and gloom. But I guess it was harder to find a community to connect with.
30 years of treatments
Thirty years on and it’s been a roller coaster to say the least. I’ve been on steroids the whole time. Whenever I try to reduce them, problems start again. I’ve had plasma exchange, immunoglobulins, immunosuppressants. I take pyridostigmine as and when I need it. After so many years of immune suppression, I’m now antibody-negative, which means I’m not eligible for most of the newer treatments like Zilucoplan. That’s been pretty devastating; if I could have one of those treatments, I might be able to come off everything else.
My biggest, ongoing issue has always been my swallow. If I talk too long, my voice becomes husky and slurred. But after 30 years, I’ve learned how to manage it. If I want a steak, I’ll have one, but I know now to take pyridostigmine an hour before, have fluids ready, have sauce on the plate, and avoid talking beforehand.
Advice for others facing a myasthenia gravis diagnosis
My advice to the community is make your own decisions about treatments like thymectomy. Mine didn’t give me long-term remission, but many people do benefit. Listen to your clinicians, but also people living with the condition, what I call patient experts, as they’re invaluable.
Bernie – I’m asymptomatic now, but there’s no knowing how long that will last
While Amanda’s journey began decades ago, mine came much more recently during lockdown in 2020. I was walking miles every day just for something to do. One day, I walked 26 miles. But a couple of days later, less than a mile into a walk, my neck kept falling forward and I could barely keep my head up.
I got seen by a GP who gave me muscle relaxants (which is ironic now we know the condition) and I went to see a chiropractor a couple days later, but he couldn’t find anything wrong. In the same week, I developed double vision and got fitted with prism glasses. By the end of that week, things had deteriorated and I got rushed to A&E with a suspected stroke as I started having problems with chewing and facial weakness.
A persistent A&E doctor ruled out a stroke but refused to send me home until they found out what was wrong. Two days later, they suspected ocular myasthenia and bloods confirmed this. Within weeks, though, it progressed to generalised myasthenia. It was only about three weeks from my first symptom to being diagnosis. I now know how fortunate that was.
My road to “recovery”
I was started on pyridostigmine, then steroids. High-dose steroids were rough on my body. They gave me weight gain, digestive issues, cramps, and it was almost impossible to exercise so it was a bit of a viscous cycle.
A year later at 60, I had a robotic thymectomy. Many neurologists won’t recommend it beyond 45 or 50, but my consultant supported it and I’m grateful he did. I had surgery on a Wednesday and was home by the Friday. I was able to stop pyridostigmine straight away and slowly tapered off steroids over the next 14 months.
Although my bloods still show evidence of myasthenia gravis, I’ve been asymptomatic since 2022. I know I could wake up tomorrow and it’s back, but I count my blessings for now.
Finding comfort in a positive mindset and the myasthenia gravis community
One of the most important things on my journey has been trying to maintain a positive mindset and continuing to find the humour in life. I went straight to Google when I was first diagnosed, and it scared the life out of me. For a couple of weeks, I genuinely thought my old life had ended. But I soon realised I needed to change how I think if I was going to fight this.
My other big piece of advice is to make use of the community that’s out there. The first person I spoke to with myasthenia gravis was Amanda through Muscular Dystrophy UK’s peer support programme. Speaking to someone living with the condition was different from speaking to consultants or nurses. It was so reassuring and opened up other opportunities to join the Myasthenia Gravis Support Group. I’d really recommend it to anyone who would like to get to know others with the same condition.
