READER REPORT:

Doctors told me it was terminal - they were wrong

REBECCA BATTERSBY
Last updated 11:46 08/07/2014
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KEEP GOING: If I hadn't taken my care into my own hands, I don't know what might have happened.

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I am a busy mum of two boisterous sons and was studying fulltime when doctors initially failed to diagnose my symptoms and then falsely diagnosed me with a terminal illness. It almost destroyed me.

In 2011 I started experiencing upper left abdominal pain. I put up with it for a week before I decided it was probably a good idea to see a doctor. My doctor thought I might be experiencing pain from a stomach ulcer and prescribed acid suppressants to give the ulcer a chance to heal.

Only a week after beginning the treatment I noticed a tingling sensation in my thumb. I was so busy going to meetings and studying that I put it out of my mind. The pain in my side remained.

The tingling turned to a heavy, weak sensation over the next few days. It crept all the way up my right arm and into my shoulder.

I again visited my doctor who suggested I had slept wrong and that the tingling would be from a pinched nerve in my neck; he prescribed a neck brace to be worn in bed for a week. He also increased my acid-suppressant medication because the pain had not eased in my stomach.

As the days wore on the heaviness and strange feelings in my right arm spread to all my limbs. It was a horrible, nervy sensation and they felt extremely weak.

Again, I visited the doctor after an event the night before when I went to get out of bed and had no sensation from the waist down. She behaved as if I was experiencing anxiety (of course I was!) and prescribed me sedative to calm me down. Nothing more was done except increasing the dose of acid suppressants again for my constant stomach pain and she ran some standard blood tests.

The sensation in my limbs fluctuated from bad to worse and back to bad again. I started experiencing severe back pain which I went to A&E for numerous times, most probably caused by anxiety.

I was then called back to my doctor's when my blood results arrived. At that visit I was diagnosed with a terminal liver disease: primary biliary cirrhosis. She printed me off a Wikipedia explanation and asked me how fast I could book in with a private gastroenterologist.

She failed to tell me the disease was terminal until in the car on the way home I read the Wikipedia page she had handed me; my head spun as I struggled to remain calm in front of my two sons.

I had to wait six weeks to get to a gastroenterologist. Six weeks of planning how to tell my sons that mummy would not see them finish school, that mummy couldn't help them learn to drive, that mummy wouldn't make it to their weddings. That mummy will die soon.

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Through all of this my stomach pain continued as did the weak sensations in my limbs.

I decided to do some research of my own on Google. Besides terrifying me further it shed some light on the symptoms I was experiencing in regards to the sensations in my limbs. There had been a study done on the symptoms of acid suppressants and a rare symptom was the ability for the medication, in high doses, as a possible trigger of polymyositis. It is, in a nutshell, where your body's immune system attacks its own muscles caused by a response to the medication. Your body sees the medication as foreign.

The symptoms all added up. I decided to cease taking the acid suppressants immediately.

Finally the specialist appointment came around. It had been the longest six weeks of my life. In that time I lost 16 kilograms and was a size 10 for the first time in my adult life. He looked through my blood work and promptly said that he did not believe I had what the GP had diagnosed. Such a relief.

What it did not explain was my stomach pain. He referred me back to my GP to organise a gastroscopy. I also told him about my research and my symptoms and he agreed that these medications could very rarely cause such a reaction.

After I ceased the medication my limbs slowly began to recover.

It has been three years since I was falsely diagnosed with a terminal illness and since doctors continued giving me increased doses of a medication that caused extremely distressing symptoms. 

My faith in the medical profession has been destroyed and if I had not taken matters into my own hands I honestly have no idea what could have happened. There were times along this journey where I requested the results of my own blood work and had to point out to doctors where there was an abnormal result because they had either ignored it or overlooked it.

I continue to have stomach pain with no answers but live a full and happy life, studying hard and raising my children.

Always, always check your blood-test results yourself if you're having continuing medical issues that doctors cannot seem to help you with.

Always keep pushing for answers and never, ever give up, even if the medical world gives up on you.


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