Personal Story

Megan

July 2017

I had just finished my GCSEs & I was packing for a once in a lifetime experience for which I had fundraised more than £2,000 over the 12 months prior; a Girlguiding trip to British Columbia, Canada. At the time of packing my mum and I both noted how tired I was but put it down to the exams finishing, so we continued to try and fit 2 weeks’ worth of clothes in a rucksack!

It was not until the connecting flight from Vancouver to the town where the jamboree was being held that my health took a turn for the worse. I had a severe pounding headache, it was more than a migraine, I still am not sure how to describe it other than absolute agony. I tried to cover my head, leaning on the tray table in front of me. I had some sips of fruit juice and biscuits as I had also started to feel dizzy. The plane was chartered for the camp, so when we landed some of the camp leaders told my group to wait so I could leave the plane slowly.
When I stood up, I felt extremely weak, I struggled with my balance & my dizziness. My heart was racing, and I felt just very unwell. We made it through the small airport & onto the coach transporting us to camp. I am still unsure if I collapsed or what exactly happened, but I have absolutely no memory of this 20/30-minute journey.

That night I joined in with the opening ceremony, struggling still to hold myself up, feeling weak & extremely dizzy. I decided it was time to head back to the tent & get some sleep, settling in at around 9pm. It wasn’t until 9am, not the next morning, but the morning after that, that I stirred. I did initially feel so much better – I was hungry, thirsty and I felt much more energised.

Less than 1 hour later I started to feel much more how I had previously felt – I spent the day resting in our communal area on camp chairs, before being escorted to the first aid tent for a lie down later in the day. This continued for another day before they decided to transfer me to the camp hospital. This was exactly as it sounds – a barn with camp beds down two sides & about 12 chairs as a mock up waiting room. I was placed in a camp bed away from the other guides as unfortunately there was a sickness bug going round and the doctors there knew, whatever it was that was wrong with me, that certainly wouldn’t help.

That evening, I was drifting in and out of awareness, with my most vivid memory being my pillow and hat falling on the floor. A nurse came and picked it up and sat with me for a while, comforting me which I really appreciated. Before sunrise I was moved over to the other section where an intravenous drip was given to me – 2 x 2l saline bags. By lunchtime I felt 80% better. I was so, so hungry! I went back to my group for dinner & I was able to enjoy the last 2 evenings with my group which I am so grateful for.

Unfortunately, at this point it was the end of the camp, which I had been looking forward to for many months. I wasn’t able to do the activities I had booked, but I was feeling better, and I was close to seeing my parents again, which were the two things I was focusing on at that stage.

I was able to enjoy the sights of Vancouver before coming home to a very emotional embrace with my parents who had gone through an equally horrible time here, unable to help and with very minimal information being provided to them. We felt utterly in the dark, so we sought advice from who we thought would help – the GP.

August – October 2017

I had several GP & A&E visits throughout the following few months. My symptoms came back around 2/3 weeks after coming home from Canada and progressively got worse. In this period the most concerning periods included when my face dropped & my left arm felt week, which was one of the few A&E visits. The doctors confirmed it was not a stroke but equally did not know what had caused the episode.

Unfortunately, this became a theme, with each GP from my practice telling me to call an ambulance if I felt unwell. Each A&E visit concluded on one of three things: some kind of post viral fatigue; attention seeking teenager; avoidance of education and even possible drug misuse was mentioned. I felt absolutely helpless. I was, and still am, a very determined academic person who just wanted to get back to school and live my life. I wanted to learn to drive, I wanted to start to gain that independence but instead I was in and out of medical appointments every week. One doctor even told me he didn’t believe me when I said I liked studying.

During this period, I also started to suffer symptoms affecting my vision, including photophobia and double vision. I went to my family opticians who urged my parents to get an MRI of my head as he was extremely concerned. So, with the long waiting lists, my parents found a private clinic, desperate for answers – but yet again we got none.

November 2017 – February 2018

This is where things took a dramatic turn downhill. On the morning of 1st November 2017, I woke up paralysed from the waist down. I couldn’t feel or move my legs, with the only sensation being in what I described as “a penny being dropped on my big toe”. My dad went to the GP to tell them what was happening & they said a doctor would come round soon. Almost 5 hours later a doctor arrived, in shock saying “you actually can’t walk? Most people say that because they can’t be bothered to come into the practice”. He was quite obviously concerned & pulled my mum into a different room to talk to her.

I was admitted into hospital, finally getting to my ward at around 9pm. I was placed on geriatrics as no one knew where I belonged. Over the next few weeks, I went through what I can only describe as hell. On my second night a lady sadly passed away, I had to buzz the nurses as they hadn’t noticed this happen. I was ‘forgotten’ one afternoon in the loo and waited for over 2 hours to be taken back to bed. And the worst moment was when the consultant told me “It’s in your head just stand up”. I felt utterly invisible, it’s a feeling I hope I never have to experience ever again.

After a week I had managed to stimulate some muscles in my leg & I was able to discharge myself. We managed to get some Physio sessions through a local university. Over the next few months, I had 2 more episodes of paralysis, and I hardly went to school, completing my work from home where I was able to.

March 2018

By this point my parents, and I, had quite honestly had enough of being passed from pillar to post with no answers. The decision was made to move GP surgeries in hope of some answers. Instantly the doctor we saw said she thought she knew what was wrong, but that she hadn’t seen it in anyone young, so wanted to run some more tests to check before she confirmed.
The tests she ran were blood tests. They showed that my B12 was around 140 and my folate was <0.1. That’s when my doctor confirmed that all of this has happened because of a B12 & Folic acid deficiency which we needed to understand. She looked back at my notes and said my b12 had been low on a previous test and had been falling over a few months. She wasn’t sure how I was even functioning considering the levels of my blood but was keen to get a treatment plan in place straight away. After explaining a few things, my mum confirmed that I take multi-vitamin tablets with b12 in (I had been doing so since I was born as I was premature) and that I had a very healthy diet. The doctor confirmed that this therefore must be being caused from malabsorption and was certain it was due to pernicious anaemia. She prescribed 6 x hydroxocobalamin injections over 2 weeks with a review after the 2 weeks of my symptoms. After the 2 weeks had passed, I was still struggling with weakness, double vision, brain fog & many other symptoms. She then prescribed a further 6 injections over another 2 weeks, with 1 injection every month following this, along with folic acid tablets.[/et_pb_text][et_pb_text _builder_version="4.24.0" header_3_text_color="#113743" header_3_font_size="21px" background_size="initial" background_position="top_left" background_repeat="repeat" custom_margin="||15px||false|false" hover_enabled="0" global_colors_info="{}" theme_builder_area="post_content" sticky_enabled="0"]

July 2018

By this time, we had found the Pernicious Anaemia sSociety, and I had signed up as a member. This became absolutely crucial when my doctor retired & I had my 3-month check-up. The doctor claimed I didn’t need injections every month but instead every 12 weeks as my b12 levels were over 2000. We protested this explaining that he wasn’t correct, and we provided him with several pieces of material from the PAS website, with a follow up appointment booked for a week’s time.

At that appointment he apologised, after reading the notes, he agreed I did need the injections once a month. He asked the nurse to show me how to do this myself so that I could self-inject and ever since he has continued to prescribe me injections when I have needed them over this 1 per month dosage.

Since then

It’s been a very busy 6 years since then. With the injections, I was able to treat the majority of my symptoms, with some weakness re-occurring from time to time & heart palpitations remaining. However, the treatment has allowed me to continue live what I would describe as a fulfilled and ‘normal’ life.

I sat and passed my A-Levels in July of 2019, achieving grades which allowed me to start my accounting and audit apprenticeship in September 2019. I worked hard over the next 4 years and sat my exams for the ACA qualification with the ICAEW, becoming a member of the ICAEW of July 2024. I have worked hard throughout this time, working my way up to being an Assistant Manager within audit gaining some amazing experiences with my current firm – recently including audit visits to clients in Spain.

I am extremely fortunate that I have been able to regain my life and independence, knowing how unwell I was. I have come away from this experience with a changed attitude, a much more positive and confident attitude to many things.

One of my main ambitions that has derived from this experience is to help the Pernicious Anaemia Society and others like me. Those who feel invisible and ignored by those we trust to help us when we are in need. By sharing my story, not only here but throughout several stages of my life since I got diagnosed, I continue to explain what happened, hopefully making people aware of the b12 deficiency & pernicious anaemia and its possible effects.
I still continue to learn more about b12 deficiencies, pernicious anaemia and many other factors around these; both in respect of my own body and general research. I am nervous about how this may continue to impact me throughout my life, growing up and possibly raising my own family in the future, but I remain positive & hopeful.

My main advice would be to believe in your gut feelings. If you know something is not right, don’t give in to doctors & other people telling you there is nothing wrong. Seek out the help and advice of those around you, including those at PAS. Nobody going through this should feel alone as many others have gone through or are going through similar experiences.