Elizabeth’s story – MyAware

My journey began in May 2006. I was teaching a Year 6 class. I was leading a team taking 60 children to the Isle of Wight for a school journey. I remember having a migraine on the journey. Very quickly during that week, I was finding it very difficult to hold my head up. It was also difficult to eat. I was finding difficulty with walking and getting up from a chair. And to be fair the later had been increasingly difficult for quite a while. I just thought that I was unfit as my busy job didn’t allow much for going for walks! I had to hand over most of the work to my lovely TA (teaching assistant) and other teachers.  When I returned to school my symptoms were still there, but I managed to get through to the end of term.    

Then I was able to seek medical advice privately and was diagnosed as having an acquired proximal muscle myopathy. I then went for an EMG at Kings College hospital. The consultant was Professor Mills. By then I could hardly walk from the car park and certainly not without physical support. His diagnosis was Myasthenia Gravis. My consultant didn’t agree with this but started me on some treatment medication. When I went back to see him, he prescribed steroids, starting with a low dose and eventually to 80 mg every other day. But I still couldn’t walk. I had not been able to go back to teaching that September.   

The consultant then said he had something else up his sleeve and prescribed a different medication. I continued seeing this consultant who still didn’t believe I had myasthenia. I asked for a second opinion as now I had been looking on the internet and decided that my symptoms fitted Lambert Eaton Myasthenia (LEMS) more than Myasthenia Gravis. I was sent back to Professor Mills for another EMG. I told him what my own diagnosis was, and he gave a nervous laugh. I was really cross and told him that I had 6 months off work and was now on half pay, and felt like my diagnostic journey was heading to nothing!    

He suddenly became nicer and said he would get me into hospital for a few days in order to establish different medication. This did not happen as he couldn’t get a private bed. So, he said he would start me on the new medication anyway. I took the first dose in the car going home from the hospital consultation and the result was amazing. The journey was about 45 mins in total. I went up the stairs using two feet one and then the other. I continued seeing this consultant until he suggested that my symptoms might be psychosomatic. Then I vowed to myself that I wouldn’t see him again. 

In the meantime, I had received support from Myasthenia Gravis Association (MGA) and had heard Professor Hanna speak at one of their regional meetings. I went to the GP and asked him to refer me to Queen Square for a second opinion. I saw Dr Parton in Professor Hanna’s clinic and for the first time felt listened to. But I then had to wait for another referral from the GP for another 12 weeks. Dr Parton had to take me down and off all the meds I was taking before he could start to treat me. It was August 2009 before I received the diagnosis of Lambert Eaton Myasthenia. By then I had had to take early retirement and I moved house to be near my family again.   

Now, some 17 years later I manage my symptoms with medication. I take my medication every two hours during the day, that’s 6 times a day. If I am late taking a tablet my walking is badly affected. I walk quite slowly but if I try walking does get easier – a feature of the difference between MG and LEMS.  Also, if you encounter – as I did – other unexplained symptoms, don’t trust a regional neurologist. Between 2020 and 2021 (during the pandemic) I ended up in our local hospital 3 times as I was blacking out at home. I had a bad time as cardiology thought it might be my heart, so I ended up with every test for my heart and an implant to measure irregularities which I didn’t need. I had an MRI after my first episode in May 2020 which showed infarcts in my brain indicating a minor stroke. But in 2021 after my last episode my daughters were told that I had the beginnings of vascular dementia, and they should take me home to live with them. The neurologists at my local hospital refused to see me and said that my episodes were definitely not epileptic. My girls had to organise for Dr Parton at Queen Square to see me face to face. His area is muscles, hence the myasthenia, but he diagnosed epilepsy and started me on medication. Since then I have not had another epileptic incident.       

I would tell anyone newly diagnosed to be persistent in trying to access support and medication. I would tell them to avoid regional hospitals as myasthenias are so rare. I used to attend regional groups, initially in Bromley, while I was living in South London and later in Hertfordshire. These were very helpful as I was able to share experiences and advice. When I was first diagnosed there was a forum on the MGA site and I could exchange messages with others both here and abroad. Now the Zoom sessions are very helpful.   

I have also found that having access to specialist nurses by email and phone appointments is amazing. 

I would like to see that newly diagnosed individuals have easy access to support systems. Plus the opportunity to be able to be in contact with others, maybe in a more informal way.