Greg Hughes knows how it feels to be stuck in ‘no mans land’.
It took four months of extreme muscle fatigue symptoms before he received a diagnosis.
Greg visited several doctors and ophthalmologists with a droopy eyelid, an inability to hold up his head and difficulty swallowing, before being diagnosed with myasthenia gravis.
He is sharing his story to increase awareness of the rare neuromuscular disease in the hope it will improve the speed of diagnosis.
Greg, his wife Anne and daughter Bernadette believe a lack of awareness about the disease, both within their family and the medical profession, delayed Greg’s diagnosis.
He presented with symptoms to four different GPs, the hospital emergency department and two ophthalmologists before diagnosis. By then the disease had become advanced.
The name ‘myasthenia gravis’ means grave or serious muscle weakness.
It’s onset may be sudden and is often not immediately recognised.
In most cases, the first noticeable symptom is weakness of the eye muscles. In others, difficulty in swallowing and slurred speech may be the first signs.
Greg struggled to continue with day to day life when he could no longer hold up his head, had poor vision from a droopy eyelid and had difficulty swallowing.
But he said some doctors dismissed his symptoms as tiredness and lethargy.
“I remember one GP was so dismissive and belittling of me. She said it was because I drink alcohol. That proved to be totally unrelated.”
For anyone to go through that uncertainty for months and not know what is wrong is pretty distressing.Greg Hughes
By the time of diagnosis and admission to hospital, Greg was almost at crisis point – a descriptor used when respiratory muscles fail and patients can’t breathe.
“He was probably only a few days away from having a crisis when he was diagnosed,” Bernadette said.
Greg said it was a relief to finally put a name to his symptoms.
“Prior to that moment, you are just in no mans land. You know you are sick but you don’t know what is wrong. For anyone to go through that uncertainty for months and not know what is wrong is pretty distressing.”
Myasthenia gravis cannot be cured, but treatment has improved Greg’s condition dramatically. At times he has spent many months symptom free.
Myasthenia gravis affects approximately 12 out of every 100,000 people.
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