Despair of Belfast woman over her 24-year wait for right diagnosis, as delay means it’s far too late to treat her condition
A woman who waited nearly a quarter-of-a-century for a correct diagnosis - only to find out it was too late for her condition to be treated - wants others with myelopathy to know they are not alone.
Old, dog-eared medical notes from 144 hospital consultations flood the living room of Margaret Reeves' apartment as she tries to piece together what went wrong in 1995.
After suffering a fall that year, the north Belfast woman was diagnosed with a fractured vertebrae in her neck by the Mater Hospital.
Just a few days later she was then informed by the Royal Victoria Hospital that her pain was down to an extra congenital rib.
It took another 23 years before she was finally told she had cervical spondylotic myelopathy, a condition that arises when the spinal cord becomes compressed - but by that stage medical treatment was no longer an option.
Ms Reeves is now calling out to those suffering from the same condition to let them know they are not alone, while demanding more treatment for myelopathy to be made available in Northern Ireland.
As her condition worsened over the years, the grandmother had to leave her Civil Service job without a pension in 2009.
And now the 57-year-old has been forced to find more suitable accommodation as her third floor apartment is no longer viable due to her tendency to fall, one of the main symptoms of myelopathy.
"I still try to motor on today but the pain is just too much," she said. "I never really got the help I needed.
"My falls have gotten worse. I've broken both feet, I've broken my toe, I fractured my ribs, I busted my face and I've knocked teeth out. After all that, I then started having continence problems.
"I just knew something wasn't right, the falls were getting worse and I even found it difficult to get out of bed and from getting from the bed to the bathroom. It felt like I was walking on springs."
After demanding a second opinion before her true diagnosis last year, Ms Reeves had to travel to England and it was only then that the possibility of myelopathy was explained to her.
Reflecting on the lack of support that was available in Northern Ireland, Ms Reeves' voice began to wobble as the years of not knowing what was wrong with her came flooding back.
"My life is spent in different departments of the hospital on a weekly basis," she said.
"My heart is broke. There is no support here for me. In Northern Ireland, out of all the people I have seen, nobody has talked to me about the red flag symptoms and nobody has explained to me what myelopathy is.
"I'm living in fear and I'm scared to let the physios touch me. I sat in the house all winter and I won't go out when it rains in case I fall."
Praising the help she has received from spinal injury charities the Spine Injury Association and Back Up, which are both based in England, Ms Reeves added that the limited support Back Up can provide again proves the lack of knowledge of myelopathy in Northern Ireland.
It was hoped that the charity could provide her with a fellow sufferer to help her through her experience. However, they could not find anyone here with the same condition.
"There is no support here. We need to talk about myelopathy. If I was living in England I would have been treated quicker.
"I don't see a future for myself because it has been left to deteriorate for so long. I've isolated myself away from people because I'm angry and I have hatred in me... I have lost trust in everybody."
Ms Reeves added that the only help she is receiving is coming from a counsellor and a physiotherapist, both of whom she is seeing privately.
"I want to create awareness of myelopathy, make sure doctors know that it's out there and act on it early and I want to know if anybody else has it," she said.
"I'm stuck in a spider's web and I'm trying to get out of it. The hospitals have had me in their grips for 20-odd years.
"I want a new three-way communication between the patient, hospitals and GPs."
The Belfast Health Trust said it could not discuss individual cases.
“But we are keen to continue discussion with Ms Reeves about her experience," a statement said.
"The diagnosis of any condition is often the result of complex analysis of scans and investigations which can be time consuming. Whilst we appreciate this can be frustrating for patients it is vital that we reach the correct diagnosis.
"The Trust makes it a priority to keep staff updated with training on a regular basis.”
- If you suffer from, or believe you suffer from, myelopathy, you can get in touch with Ms Reeves at firstname.lastname@example.org