When I returned to school, my symptoms were still there, but I managed to get through to the end of the 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 King's College Hospital to see a consultant. By then, I could hardly walk from the car park and certainly not without physical support. His diagnosis was myasthenia gravis. My own consultant didn't agree with this but started me on Mestinon. My condition didn’t improve. 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 in that September.

The consultant then said he had something else up his sleeve and prescribed azathioprine. I can't remember the dose at the time. 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 fit LEMS more than myasthenia gravis. I was sent back to the original consultant for another EMG. I told him what my own diagnosis was, and he gave a nervous laugh. He said that he was one of the top three consultants in the country, and he thought his patient was right. I was very cross and told him that I had had six months off with full pay and was now on half pay, heading to nothing!

He suddenly became nicer and said he would get me into the hospital for a few days to adjust medication. This did not happen as there was no private bed available. So, he said he would start me on the new medication anyway! I took the first DAP in the car going home from the hospital consultation. The result was amazing. The journey was about 45 minutes in total. I went up the stairs using two feet, one after the other, for the first time in months! 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 myaware and had heard a professor speak at one of their regional meetings. I went to my GP and asked him to refer me to Queen Square for a second opinion. I saw a neurologist and, for the first time, felt listened to. But I then had to wait for another referral from the GP for another 12 weeks. I had to be taken 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 19 years later, I manage my symptoms with medication. I take DAP every two hours during the day, 20 mg 6 times a day. If I am late taking a tablet, my walking is badly affected. I walk quite slowly, but if I try hard, walking does get easier - a feature of the difference between MG and LEMS.

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 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 epilepsy. My girls had to organise for a GP at Queen Square to see me face-to-face. His area is muscles, hence the myasthenias, but he diagnosed epilepsy and started me on medication. I have not had another epileptic incident since May 2021.

I would tell anyone newly diagnosed to be persistent in trying to access support and medication.

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 know that anyone newly diagnosed could have easy access to the support systems as above. And the opportunity to be able to be in contact with others, maybe in a more informal way.

It has not always been an easy journey. I struggle with insomnia and pain at night in addition to IBS and diabetes, as well as epilepsy, but I am grateful for all the medication and support that I have.