Irish Twins Search for Answers for Bizarre Symptoms
August 12, 2015
It all started in England where I was a lecturer in social work.
I was in my mid forties. I was becoming more and more tired, with repeated infections. Over the course of ten years I found myself struggling to find a diagnosis. First I was told I had ME and sent to psychiatrist for graded exercise. Then I was told it was CFS and moved to immunology, then I started getting a tremor in my left hand.
Neurology determined that this was Parkinson’s disease and I started on treatment for that. Then I went home to Ireland at age 57 . Early retirement. Why so early? Because I had become crushed by fatigue and found walking very difficult indeed. A weakness and utter heaviness of legs consumed my energy.
Not all of the pieces seemed to fit. If I had Parkinsons why was I not able to walk and why did I have to use a wheelchair? My twin, meanwhile, was going down the same route just as I was. She had determined a muscle problem with raised CK. I then asked my doctor to do CK test which was raised also…I then went back to the UK for private muscle biopsy and this took us down another route. With irish consultants utterly confused the doc arranged a way to get us both to the UK national hospital for neurology in Queen Square London. Another muscle biopsy was done and then came the response ‘most probably mitochondrial disease.’
As muscle myopathy and various defects found in the muscles. So we were referred to professor chinnery of Newcastle for genetics and more mito tests. Only two weeks ago we got a response: We might have mitochondrial disease– But a new form not seen before. Parkinsonism, muscle myopathy, dystonia, and, for my twin Ann, a host of autoimmune diseases. We are now almost unable to do anything, breathing, heart, legs, brain, energy so low, all affected. Powered wheelchairs are essential. Age 62 we never expected to be so sick, so disabled…do you ever?
Our journey medically was one traumatic year after year of total despair . Doctors seemed too slow! We were not well ‘kept in the loop’ with months of total isolation regarding findings, thoughts and views of docs. Ringing, emailing, brought silence. It was depressing, it was lonely. Here in Southern Ireland, the Republic , there are no mito specialists. None. No mito nurses for adults, there are a few for children. We have no- one to support us. We are left to own devices. Local health services just don’t understand. It has taken 4 years to fight for a powered wheelchair. We are seen as demanding. But we are not, just saying how ill we are. Services in this small island of just 4 million people racked by ‘austerity’ we the rare patients are bottom of the pile. We just don’t count. With a disease not understood…you are treated as if you are making it all up! Being older too, we hit the ‘ageist’ barrier! ‘Sure they don’t need anything because they are nearly on the way out’ seems to be the attitude.
It’s hard to be upbeat, positive. With such debilitating disease, combined with no mitochondrial specialists in Ireland, and a health service crumbling before our eyes we are almost third world levels of care…actually we ARE Third world levels of care. We will fight on. We are activists. We scream for medical justice. We will , I hope, get there eventually!
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