AN Oldpark woman has been diagnosed with a rare spinal illness – 23 years after being injured in a fall.
Margaret Reeves (58) says a scan revealed her condition in 2007, but she was only told about it when she became one of the patients recalled last year by under-investigation neurologist Dr Michael Watt. Now, after waiting nearly a quarter-of-a-century for a correct diagnosis, she’s been told it’s too late for her to be cured of the spinal disorder spondylotic myelopathy.
Margaret’s story began in 1995 when she suffered a bad fall and was diagnosed with a fractured vertebra in her neck after a visit to the Mater. Days later, she was referred to the Royal Victoria Hospital who put the pain she was suffering down to an extra congenital rib that she was born with. Her chronic battle with pain took its toll to the extent that she had to quit her job in the Civil Service.
Speaking to the North Belfast News in her Cedar Avenue flat, Margaret explained her long and painful journey to the truth began 13 years after her first fall.
“I started having a series of bad falls in 2009,” she said. “In short, I was passed around different neurologists. I knew in my heart that something was wrong.
“I was breaking bones all over my body. I just couldn’t balance. I was a patient of Dr Michael Watt. He diagnosed me with epilepsy, but I never took the medication because I never believed I had epilepsy.”
On being recalled by Dr Watt last year, Margaret found out for the first time what a scan from the past had revealed.
“It wasn’t until the recall that I was told a scan in 2007 showed I had chronic spondylotic myelopathy, but now it was now too serious to be cured. I had been passed between neurology wards and GPs for over 20 years and the reality was that my diagnosis was known in 2007 but nobody told me.
“I only found out I had this condition because I was a recall patient for something else.
“How many more people are out there similar to me who haven’t been diagnosed with myelopathy?
“It is estimated that one in four people could have it. I would say to anyone who suffers from compression in the back, slipped discs, or if you are dropping things or have tingling in the hands, that you may have myelopathy.”
A tearful Margaret added: “I will end up in a wheelchair. I will lose the power of my arms and not be able to feed myself because my diagnosis went on so long.
“I feel very alone. I don’t know anyone else with it.
“The sad reality is that this condition can be prevented if it is discovered early enough.”
Margaret wants to use her heartbreaking story to reach out to others and raise awareness of myelopathy to let them know they are not alone.
She recently returned from a trip to New York to meet fellow patients and top neurologists from across the world at a myelopathy conference.
“Myelopathy is out there but people don’t know they have it,” she added. “I want to focus on the disease and its progression if not treated. Myelopathy is a degenerative disease and there are guidelines on when to operate.
“Unfortunately for me, I wasn’t treated sooner and it may have slowed the condition down.
“I suffered for years not knowing what was wrong with me.
“There is no support here in Northern Ireland. I don’t know where I would be without the support of myelopathy.org, Spinal Injuries Association and AOSpine as well as Cambridge University who are pioneering more research and work into the condition.
“We need to talk about myelopathy. If I was living in England I would have been treated quicker.
“I am worried about the future because it has been left to deteriorate for so long.”
Margaret said she wanted to thank Belfast Back Care for their treatment and Archie Coogan for his holistic therapies.
If you suffer from, or believe you suffer from, myelopathy, you can get in touch with Margaret Reeves at
Margaret-06@hotmail.co.uk.
