A father of one was left to struggle to walk due to a mysterious muscle wasting condition that left him in excruciating pain.
The pain started in Stuart Irvine’s calves and back and left the 38-year-old fearing in 2020 that his muscles were tightening.
Newcastle doctors ruled out dysferlinopathy, which they thought would leave him in a wheelchair, but consultants instead believe he has a genetic condition of muscle wasting.
The IT worker has further appointments in the coming weeks to discuss what will happen next and said his symptoms are getting worse.
He said: “Now I’m back in the terrible limbo scenario where I don’t know what conditions I have and it could be more months / years of testing to arrive at a confirmed diagnosis.
“This struck me physically and mentally as I’ve always been pretty athletic.
“Over the past six years, I have had to watch it decrease with progressive muscle loss in the calves and trapezius, making normal movement extremely difficult.
“Now even walking is very embarrassing and uncomfortable. It’s hard when you have to actively think about how best to put one foot in front of the other at just 38. It is such a rare condition and there are only two consultants in the country who can address it.
“It’s been a long and anxious road to get to this point, but it’s no one’s fault. I am just unfortunate that I have developed something that is very difficult to diagnose and not much is known about it.
“I will go to a specialist center in Newcastle for more tests in a few weeks and I hope these will finally provide me with the answers I have been waiting for so long. It was a long process because other conditions like MND and MS had to be ruled out. “
Mr. Irvine, from Kelvindale in Glasgow’s West End, first noticed that something was wrong when his right leg started to hurt.
Initially, he thought it was due to the back pain he was suffering from, but six months later his calf muscles became so sore that he struggled to get out for a jog.
During the coronavirus pandemic, he noticed that his left calf was also becoming painful and it looked like the muscle was shrinking.
He said, “I was sitting watching television and putting my legs on the coffee table when I noticed my right calf looked weird.
“It was almost like the muscle was gone, and I thought it was weird because I’ve always been very active. I tried not to worry, but then during the lockdown I noticed that my left was going the same way.
“My doctor thought it was nerve damage of some kind and I was hoping things would get better on their own. Things got so bad that I couldn’t run out without pain, and even walking any distance became a struggle.
“Fortunately, I had private health insurance and was able to see a specialist. I have a boy and it devastates me not to be able to play soccer with him and run after him like any other dad.
“Having to face six years of uncertainty was terrible. I just hope the next round of tests can show a definitive diagnosis and give me a closure.
“It’s always in the back of my mind. I have done a lot of research and know what I am facing. I have gone from being active and constantly on the move to having to be more aware of what I do as my muscles are simply wearing off.
“Private tests cost a lot of money and can take a long time to get results. It is horrible that your life has remained in limbo.
“Muscle condition doesn’t get the millions of pounds in research funding that others do, but the people who have impacted matter as well.”
Mr. Irvine is raising money to launch a charity to help people with muscle diseases, to create an online hub where people can share experiences, and to assist with diagnosis and treatment.
You can find his GoFundMe page here.