Personal Story

Linda

Despite my concerns, I was dismissed with suggestions of stress management and yoga. I tried to do more as exercise as I felt unfit but my life was grim with lots of symptoms, I couldn’t read or watch TV or even talk for long, I became isolated as events in my life came and went and my husband worked from home to care for me.

The turning point was a severe fall in 2018. I hit my head hard, and the fatigue became unbearable. I experienced dizziness, vertigo, and even migraines – something I’d never had before. I had numerous tests and GPs suggested various causes including anxiety attacks, mental health issues, recreational drugs and offered hormone replacement therapy.

Finally, after numerous GP visits, a neurologist referral, a private test for vestibular disorder and a series of other tests, the culprit was revealed: B12 deficiency and injections required for life.

Even with a negative Intrinsic Factor Antibody test it turns out my body wasn’t absorbing this crucial vitamin properly. I found the Pernicious Anaemia Society website and was able to read small sections in the dark.

The initial shock was immense. How could this have happened to me? I ate a balanced diet, including plenty of meat and dairy. With hindsight the way the symptoms crept up on me felt like a rope pulling me backwards. I had tried hard to explain to friends and health care professionals, but I just wasn’t listened to. I became irritable, scatty and felt detached from the world, personality traits I had never experienced before. I was offered anti-depressants which I refused even though my mood was low, I knew it wasn’t depression.

The road to recovery was long and arduous, in fact it got worse before it got better and like many others report, I thought I was dying. B12 injections, along with vestibular physiotherapy, slowly helped me regain my balance and reduce the debilitating fatigue.
Looking back, I’m frustrated by the initial misdiagnoses and the lack of attention to my concerns. It highlights the importance of advocating for yourself and not dismissing your body’s signals. When I look back at the conversations with professionals who were meant to help me, I’m frustrated at how many signs there were which are known to be linked to B12 deficiency which they ignored and I lost years of my life because I was untreated.

Today, I’m on B12 injections, and while I’m not fully back to my old self, I can walk, drive, and even cycle short distances.

I am still left with symptoms including sensitivity to light, tinnitus, a vestibular disorder and physiotherapy is still required. My mother is on B12 injections 8 weekly, and these have been stopped and reinstated 4 times. My daughter who had megaloblastic anaemia and POTS received injections every 10 weeks until a nurse randomly stopped these a few weeks ago. The fight continues!

Notably, however, improvements are still being made so long as I pace myself and keep injecting B12. It is a maintenance programme that means I can now walk in a straight line, think/ process better even if my typing is a bit erratic! My memory is back, I can watch TV and read a little. I feel I’m starting to enjoy life again and can even tolerate the occasional glass of wine.

Key Takeaways:

• Listen to your body: Don’t dismiss persistent symptoms.
• Advocate for yourself: If your concerns aren’t taken seriously, seek a second opinion.
• B12 deficiency can present in unexpected ways: Fatigue, cognitive issues, and neurological problems can all be signs.

My journey has been a stark reminder of the importance of good support and the need for proactive healthcare.
I hope my personal story helps raise awareness about B12 deficiency and encourages others to listen to their bodies.