My Life Changing, Life Destroying Story
Last updated: October 2022
My name is Stephen, I reside in the North East of England. I've never enjoyed great health since 2003 when I developed chronic recurring nasal polyps, and I'm now five operations in and still suffering. I developed COPD in 2006 and an allergic reaction to all non-steroidal anti-inflammatories in 2010 when I suffered anaphylaxis and was rushed into resuscitation.
The past six years
In 2016 I was undergoing a chest X-ray following a bad chest and sinus infection when a tumor was picked up on my right kidney and subsequently removed in 2017. In 2018 I suffered terribly from chronic abdominal pain and underwent a full bladder removal the same year. In 2019 I had my fifth nasal polypectomy.
My last day of work
During the COVID-19 pandemic, due to my health, I was shielded by the government for a year and was financially supported by my employer. But on November 17th, 2021 I developed a terrible case of double vision whilst at work, and was sent home, I have never returned.
The diagnosis I did not want
The vision got worse, my breathing compromised, chewing became difficult and tiring, my speech became slurred and I became extremely distressed and weak. In January 2022 I was sent to an eye consultant and with help of a neurologist, they were convinced I had MG.
A blood test was taken and other tests carried out showed my body appeared to be failing me from head to foot. The blood test came back showing advanced general myasthenia gravis and I was sent to a neurologist to receive treatment urgently, I was placed on 240mg daily of Mestinon, and 60mg of prednisolone.
My current situation
I am suffering from extreme bouts of leg and arm cramps, I've lost control of my bladder, I get less than four hours of sleep per night, my bowel habits have changed, my mood is low, I'm scared to leave my home, my driving license has been revoked and I've sold my car. I am about to lose my employment on "ill health" retirement grounds by the end of June.
We need to lean on each other
This horrible, life-destroying condition has ruined my life, has left me a shadow of who I was and what I was, and I need to stay in contact with others with MG to help me understand! To all MG sufferers, I truly feel how you feel, I need us to be together as one to help each other, and I'm sending love to all of us!
Stephen Wright, age 56
How often do you experience MG exacerbations/flares?