Father left struggling to walk because of mystery muscle wasting condition

A father-of-one has been left struggling to walk because of a mystery muscle wasting condition which has 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 shrinking.

Doctors in Newcastle ruled out Dysferlinopathy, which he thought would leave him wheelchair-bound, but consultants instead believe he has a genetic muscle wasting condition.

The IT worker has further appointments in the coming weeks to discuss what happens next and said his symptoms are worsening.

He said: “I’m now back in the awful scenario of limbo where I don’t know what condition I have and could be further months/ years of testing to get to a confirmed diagnosis.

“This has hit me physically and mentally as I have always been quite athletic.

“Over the past six years, I have had to watch that diminish with progressive muscle loss in my calves and trapezius, making normal movements extremely difficult.

“Now even walking is very awkward and uncomfortable. It is difficult when you must actively think about the best way to put one foot in front of the other at just 38 years of age. It’s such a rare condition and there’s only two consultants in the country able to deal with it.

“It’s been a long and anxious road to reach this point, but it’s no one’s fault. I’m just unlucky that I’ve developed something that is very difficult to diagnose and not a lot is known about it.

“I’m going to a specialist centre in Newcastle for more tests in a few weeks and I’m hoping these will finally provide me with the answers I’ve waited so long for. It’s been a long process because other conditions such as MND and MS have had to be ruled out.”

Mr Irvine, from Kelvindale in the West End of Glasgow, first noticed something was wrong when his right leg began to ache.

Initially, he thought it was due to back pain he was suffering, but six months later his calf muscles became so sore that he struggled to go out jogging.

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During the coronavirus pandemic, he spotted that his left calve was also becoming painful and looked as if the muscle was shrinking.

He said: “I was sitting watching television and put my legs on the coffee table, which was when I noticed my right calf looked strange.

“It was almost as if the muscle was gone, and I thought it was odd because I’ve always been very active. I tried not to worry, but then during lockdown, I noticed my left one was going the same way.

“My doctor thought it was nerve damage of some sort, and I hoped things would improve on their own. Things became so bad that I couldn’t go out running without experiencing pain, and even walking any distance became a struggle.

“Thankfully, I had private health insurance and was able to see a specialist. I have a little boy and it devastates me that I can’t play football with him and run around after him like any other dad.

“Having to cope with six years of uncertainty has been awful. I’m just hoping the next round of tests will be able to show a definitive diagnosis and give me some closure.

“It’s always at the back of my mind. I’ve done a lot of research and I know what I’m facing. I’ve gone from being active and constantly on the go to having to be more mindful about what I do as my muscles are just fading away.

“Private testing costs a lot of money, and it can take so long to get the results. It is horrible having your life left in limbo.

“Muscular conditions don’t get the millions of pounds of funding for research that others do, but the people impacted matter just as much.”

Mr Irvine is fundraising to launch charity to help people impacted by muscular 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.