Hello, I am Hayley and I am a 26 year old woman. I am currently employed full time in an office and even have the occasional business trip abroad. I have been able to manage my condition alongside my career. Beside from work, I am a keen runner who joined a local running club in summer 2022 before my diagnosis. I would like to share my story with you to give others who have experience of myasthenia, be that through living it with themselves or supporting a family member, some hope about what the future may hold.

Myaware has been invaluable to me during the last year with regard to the wealth of information both online, shared through the zoom calls, Facebook groups and also on one-to-one calls with members of the team to advise on how to handle telling work about my condition and how to inform the DVLA of my double vision. I found the personal stories page to be of great comfort to me during my diagnosis and still regularly visit the page now; in particular I felt able to resonate with Charlotte and Zainab as a young woman but also Steve  as his photo on the aeroplane in the sunflower lanyard and with a prism on his glasses gave me the confidence to wear my lanyard when I travel in public and to wear my prism when I used to require this.

The purpose of writing this is to share the journey I have been on with my diagnosis and condition up until now, but to also share that despite everything you will read beyond this point I have achieved more than I thought I would be able to. I have started a new job, been promoted within that job, travelled Australia solo for one month, been on multiple holidays including a hen-do, and I have recently joined a gym going twice a week lifting upper and lower body weights where previously I experienced upper body weakness. In addition to this, I run three times a week and am currently training for a marathon. Through the success of my medication and my thymectomy I am in remission. When you have those dark periods when your condition is not well managed and the uncertainty of the future is overwhelming, you never know what is around the corner and even a few months can make a massive difference to both your physical and mental health.

I feel it is important to go right to the beginning regarding my diagnosis as the total process took just over 1 year. In January 2022 I developed light-headedness and double vision. In the initial stages I don’t remember there being any pattern to my double vision. I went to the opticians for an eye test and it was picked up that I had one eye sitting ever so slightly higher than the other and I was told I may need a prism to be fitted to my glasses. Fast forward to September 2022 and I had an appointment at my local hospital with an Ophthalmologist. By this point however, the double vision had almost resolved itself. Based on the eye tests in the hospital there was no concern over my eyesight and I was discharged. From here I functioned well with no noticeable day-to-day double vision.

In December 2022 I started to develop double vision again. This time it was in a different form to earlier in the year. Over the course of 2-3 weeks this worsened further. I initially ignored my double vision in December on the basis that the last time I got this checked at the hospital, I was told I was fine and so did not want to waste anyone’s time and assumed it would resolve itself again. When the double vision was progressing, I went to A&E to try and get some answers fast. Within a few hours of being in the hospital, I had a CT scan to check for a brain tumour. When this came back clear I was told the Doctor suspected I could have a condition called ocular myasthenia gravis. To diagnose this, I had a blood test to look for a specific antibody and was told to wait for the results. I also had developed a squint and was unable to move my left eye to the left, which I hadn’t even noticed until it was picked up in hospital. In addition to this I had slight drooping of one of my eyelids which again, when I look back at photos now, I do not know how I did not notice these two symptoms.

As soon as I got home, I went into a frenzy of researching ocular myasthenia gravis. Every charity webpage, medical article and forum I could find that even remotely mentioned the condition was read multiple times. At this stage of my diagnosis I remember feeling equally intrigued and scared. There were so many adjectives to describe the condition; rare, disease, auto-immune, incurable, neuromuscular, disability, muscle-weakening, chronic, worsening. It was overwhelming to say the least. I then read about how the condition can initially present as ocular (eye symptoms) but then sometimes progress to become generalised myasthenia gravis. For me the unknown about whether my condition would progress to encompass these additional symptoms, and if so then when and at what severity, was very difficult to deal with. 

I re-presented at A&E one week after my first visit with worsening double vision and started medication as part of the diagnostic process. It is typical with myasthenia that symptoms worsen throughout the day with fatigue, which wasn’t the case for my double vision and eye-lid droopiness, so this was the only element that left doubt in my mind with regard to my diagnosis. With this in mind, I continued to research other conditions with similar symptoms including MS and Miller Fisher Syndrome. The waiting time for the blood test results was two months on the NHS. 

In this time, I experienced anxiety to the point where I thought my myasthenia had worsened to encompass breathing difficulties. I also got to the point where I was overthinking every time I swallowed any food, trying to take note of even the slightest change in my ability to swallow. After doing some tests at the hospital in February, I was told my breathing was fine and this was likely anxiety. So what did I do? I went travelling the East Coast of Australia by myself for four weeks while I waited for my results. This was an action-packed holiday staying in hostels, travelling by overnight bus, camping and sailing trips as well as surfing lessons and snorkelling.

Feelings of relief, upset and denial filled me when I read the NHS letter saying my blood test results showed I have the antibodies in my blood for myasthenia gravis which I received two days after landing back in the UK. How could I have felt 100% healthy just one year before, and for most part just several months before, and now I have been told I have an incurable rare disease? It just didn’t make sense to me. This denial came and went in waves, and I found myself waking up some mornings thinking ‘do I really have myasthenia gravis? Have they really got the diagnosis correct?’ despite the bloodwork proving it. 

After my diagnosis I had my first appointment with Neurology to discuss the condition. I was referred for a chest CT scan to assess my thymus gland. My scan showed hyperplasia which is inflammation of the thymus. I underwent keyhole VATS Thymectomy early May 2023 and I have recovered very well from surgery. I am currently classified as being in remission and am reducing my medication gradually. I have already been able to stop taking one medication completely. When I think back to where I was a year ago, I feel like it was a dream.

Even after having myasthenia for just a short time, I have quickly learnt that there will be constant hurdles I need to overcome. Most likely these will be changes to my symptoms and medication.  Despite these hurdles I am still enjoying life to the full and want to reassure anyone who is newly diagnosed that your diagnosis is not the end of the world even if it feels that way.

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