20th September 2004
I just found this posted on another forum, thought maybe of some interest
Why one man was happy to be misdiagnosed
with motor neurone disease
by FRANCES HARDY, Daily Mail
13:05pm 13th March 2002
A year ago, Terry Bott, 69, was diagnosed with motor neurone disease and told he had only a short time to live. Eight months later, having prepared for his death, he learned he had not got MND after all but polymyositis - a treatable condition.
Terry, a retired headmaster, lives with his wife Norma, 58, a retired teacher, near Chesterfield, Derbyshire. This is his uplifting story.
One day last year, I sat down and planned my own funeral. I chose the prayers and the music, and decided where my ashes should be scattered. Then I had a photograph taken with Norma, our three children and grandchildren, assuming it would be the last picture we would have of us all together.
After 18 days of tests, I had been told by a specialist at Charing Cross Hospital in London that I had motor neurone disease. There was no cure, he said, and the quality of life left to me would be poor.
MND is a rapidly progressive disease that affects the nerve cells in the brain and spinal cord. Eventually, I was told, I would not be able to walk, talk or feed myself.
Norma and I cried together. We'd been happily married for 36 years. We had two sons, a daughter and two lovely grandchildren. Knowing that I would not see them grow was so hard. We'd planned to do so much in our retirement - but even the countryside walks we'd looked forward to would soon be beyond me.
I was told the strength in my limbs would wane quickly and I would soon be unable to cope with stairs. The specialist advised us to consider moving to a bungalow. Quite soon, he said, I would be confined to a wheelchair.
When the initial shock had subsided, I decided there were two ways to cope: either I could capitulate and resign myself to death, or I could use the short time left to me productively.
I resolved to be positive and to treasure every moment. I also decided to set up a research fund into MND because I wanted to leave a legacy of hope.
THE first signs of my illness had showed themselves two-and-a-half years ago. I'd recently retired as head of a school for handicapped children - a job I felt supremely privileged to do - but I'd always been fit, active and a keen sportsman.
Perplexingly, I found my strength flagging. We were staying with friends in Scotland who have a house with an imposing staircase: I found I could not reach the top without crawling on all fours.
My daughter Katie, who's a GP, examined me and referred me to a specialist at Charing Cross Hospital. After tests came the news that I had maybe three years to live.
Norma worried endlessly but she coped by taking one day at a time. She would say: 'Perhaps there will be a miracle - maybe the worst will not happen.' But in our hearts, we knew that it would.
But even on bad days there was much to look forward to. Some nights, I would wake and just watch Norma sleeping and think how lucky I was. What I felt for her was deeper than love.
Meanwhile, my condition deteriorated. Strength was ebbing from my left hand and I could not open a cupboard or grasp a handle. Climbing the stairs was like getting to the top of Everest.
In August last year - four months after diagnosis - I returned to Charing Cross Hospital. My consultant said my mobility had reduced from 67 pc to 33 pc. He said I would need a wheelchair by Christmas.
He told me MND was a terrible illness but a kind death, and that I would probably fade away quietly in my sleep.
I came home and it seemed so final. The MND was taking hold. I could not control my movements and I kept falling.
I resolved to make a final heroic effort to raise funds for a research post into MND. I met fellow sufferers and found that consoling them helped me. When you listen to other people's problems, there is no time for self-pity.
My life might have continued like this - shadowed by my imminent death - were it not for a simple geographical fact. Because I was finding the journey to London increasingly difficult, my consultant suggested I transfer to the Hallamshire Hospital in Sheffield.
Here, the eminent neurologist Professor Pam Shaw took me onto her patient list.
Professor Shaw examined me and said she was not certain I had MND. Her words barely registered - I did not allow myself any hope - but she sent me for a muscle biopsy in my thigh.
A little later, the professor invited Norma and myself to a medical seminar in Sheffield. We sat among the audience of two dozen doctors as she addressed them. The thrust of her speech was that sometimes symptoms could be misread.
She then walked over to me, put her hand on my shoulder and said: 'It has always been my ambition to say this to a patient. Mr Bott, I'm going to give you the finest gift ever. You're not going to die yet. You haven't got MND.'
Everyone in the room burst into applause. Tears started to run down my cheeks. Relief flooded over me like a tide.
Professor Shaw told me I was suffering from polymyositis - a rare disease which causes inflammation of the muscles. The symptoms mimic so closely those of MND that they can easily be confused.
But while MND is incurable and fatal, polymyositis can be treated with steroids. With prompt treatment, I was told, it was possible I would regain full mobility.
I did not sleep that night for sheer joy. I lay in bed smiling, saying: 'Lord, thank you.' I was a new man. I had been given a second chance at life.
People have asked whether I felt angry that Norma and I spent so much time suffering and worrying fruitlessly.
Actually, I am quite philosophical. Medicine is an imprecise science. My only regret is that a muscle biopsy was not carried out as a matter of routine. I am disappointed it was not done.
Now the euphoria has subsided, I am slowly regaining strength. I feel very blessed, very positive. I believe I have a huge capacity to comfort those who are desperately ill with MND because I know what if feels like, emotionally and physically, to have the disease.
So far, my appeal has raised £20,000. Today, I realise what is important in life - and I know that if I have love and health, then I am rich.'
__________________________________________________
What is Polymyositis?
Polymyositis is an inflammatory muscle disease that causes varying degrees of decreased muscle power. The disease has a gradual onset and generally begins in the second decade of life. Polymyositis rarely affects persons under the age of 18. The most common symptom is muscle weakness, usually affecting those muscles that are closest to the trunk of the body (proximal). Eventually, patients have difficulty rising from a sitting position, climbing stairs, lifting objects, or reaching overhead. In some cases, distal muscles (those not close to the trunk of the body) may also be affected later in the course of the disease. Trouble with swallowing (dysphagia) may occur. Very rarely, the muscles ache and are tender to touch. The disease may be associated with other collagen vascular, autoimmune or infectious disorders
Is there any treatment?
Treatment for polymyositis generally consists of a steroid drug called prednisone. For patients in whom prednisone is not effective, immunosuppressants such as azathioprine and methotrexate may be prescribed. Intravenous immunoglobulin has also helped difficult cases. Physical therapy is usually recommended to avoid muscle atrophy.
What is the prognosis?
The prognosis for polymyositis varies. Response to therapy varies from very good to satisfactory. Some patients have a more severe disease that does not respond adequately to therapies and are left with significant disability. Death is rare but may occur in patients with severe and progressive muscle weakness, dysphagia, malnutrition, pneumonia, or respiratory failure.
Why one man was happy to be misdiagnosed
with motor neurone disease
by FRANCES HARDY, Daily Mail
13:05pm 13th March 2002
A year ago, Terry Bott, 69, was diagnosed with motor neurone disease and told he had only a short time to live. Eight months later, having prepared for his death, he learned he had not got MND after all but polymyositis - a treatable condition.
Terry, a retired headmaster, lives with his wife Norma, 58, a retired teacher, near Chesterfield, Derbyshire. This is his uplifting story.
One day last year, I sat down and planned my own funeral. I chose the prayers and the music, and decided where my ashes should be scattered. Then I had a photograph taken with Norma, our three children and grandchildren, assuming it would be the last picture we would have of us all together.
After 18 days of tests, I had been told by a specialist at Charing Cross Hospital in London that I had motor neurone disease. There was no cure, he said, and the quality of life left to me would be poor.
MND is a rapidly progressive disease that affects the nerve cells in the brain and spinal cord. Eventually, I was told, I would not be able to walk, talk or feed myself.
Norma and I cried together. We'd been happily married for 36 years. We had two sons, a daughter and two lovely grandchildren. Knowing that I would not see them grow was so hard. We'd planned to do so much in our retirement - but even the countryside walks we'd looked forward to would soon be beyond me.
I was told the strength in my limbs would wane quickly and I would soon be unable to cope with stairs. The specialist advised us to consider moving to a bungalow. Quite soon, he said, I would be confined to a wheelchair.
When the initial shock had subsided, I decided there were two ways to cope: either I could capitulate and resign myself to death, or I could use the short time left to me productively.
I resolved to be positive and to treasure every moment. I also decided to set up a research fund into MND because I wanted to leave a legacy of hope.
THE first signs of my illness had showed themselves two-and-a-half years ago. I'd recently retired as head of a school for handicapped children - a job I felt supremely privileged to do - but I'd always been fit, active and a keen sportsman.
Perplexingly, I found my strength flagging. We were staying with friends in Scotland who have a house with an imposing staircase: I found I could not reach the top without crawling on all fours.
My daughter Katie, who's a GP, examined me and referred me to a specialist at Charing Cross Hospital. After tests came the news that I had maybe three years to live.
Norma worried endlessly but she coped by taking one day at a time. She would say: 'Perhaps there will be a miracle - maybe the worst will not happen.' But in our hearts, we knew that it would.
But even on bad days there was much to look forward to. Some nights, I would wake and just watch Norma sleeping and think how lucky I was. What I felt for her was deeper than love.
Meanwhile, my condition deteriorated. Strength was ebbing from my left hand and I could not open a cupboard or grasp a handle. Climbing the stairs was like getting to the top of Everest.
In August last year - four months after diagnosis - I returned to Charing Cross Hospital. My consultant said my mobility had reduced from 67 pc to 33 pc. He said I would need a wheelchair by Christmas.
He told me MND was a terrible illness but a kind death, and that I would probably fade away quietly in my sleep.
I came home and it seemed so final. The MND was taking hold. I could not control my movements and I kept falling.
I resolved to make a final heroic effort to raise funds for a research post into MND. I met fellow sufferers and found that consoling them helped me. When you listen to other people's problems, there is no time for self-pity.
My life might have continued like this - shadowed by my imminent death - were it not for a simple geographical fact. Because I was finding the journey to London increasingly difficult, my consultant suggested I transfer to the Hallamshire Hospital in Sheffield.
Here, the eminent neurologist Professor Pam Shaw took me onto her patient list.
Professor Shaw examined me and said she was not certain I had MND. Her words barely registered - I did not allow myself any hope - but she sent me for a muscle biopsy in my thigh.
A little later, the professor invited Norma and myself to a medical seminar in Sheffield. We sat among the audience of two dozen doctors as she addressed them. The thrust of her speech was that sometimes symptoms could be misread.
She then walked over to me, put her hand on my shoulder and said: 'It has always been my ambition to say this to a patient. Mr Bott, I'm going to give you the finest gift ever. You're not going to die yet. You haven't got MND.'
Everyone in the room burst into applause. Tears started to run down my cheeks. Relief flooded over me like a tide.
Professor Shaw told me I was suffering from polymyositis - a rare disease which causes inflammation of the muscles. The symptoms mimic so closely those of MND that they can easily be confused.
But while MND is incurable and fatal, polymyositis can be treated with steroids. With prompt treatment, I was told, it was possible I would regain full mobility.
I did not sleep that night for sheer joy. I lay in bed smiling, saying: 'Lord, thank you.' I was a new man. I had been given a second chance at life.
People have asked whether I felt angry that Norma and I spent so much time suffering and worrying fruitlessly.
Actually, I am quite philosophical. Medicine is an imprecise science. My only regret is that a muscle biopsy was not carried out as a matter of routine. I am disappointed it was not done.
Now the euphoria has subsided, I am slowly regaining strength. I feel very blessed, very positive. I believe I have a huge capacity to comfort those who are desperately ill with MND because I know what if feels like, emotionally and physically, to have the disease.
So far, my appeal has raised £20,000. Today, I realise what is important in life - and I know that if I have love and health, then I am rich.'
__________________________________________________
What is Polymyositis?
Polymyositis is an inflammatory muscle disease that causes varying degrees of decreased muscle power. The disease has a gradual onset and generally begins in the second decade of life. Polymyositis rarely affects persons under the age of 18. The most common symptom is muscle weakness, usually affecting those muscles that are closest to the trunk of the body (proximal). Eventually, patients have difficulty rising from a sitting position, climbing stairs, lifting objects, or reaching overhead. In some cases, distal muscles (those not close to the trunk of the body) may also be affected later in the course of the disease. Trouble with swallowing (dysphagia) may occur. Very rarely, the muscles ache and are tender to touch. The disease may be associated with other collagen vascular, autoimmune or infectious disorders
Is there any treatment?
Treatment for polymyositis generally consists of a steroid drug called prednisone. For patients in whom prednisone is not effective, immunosuppressants such as azathioprine and methotrexate may be prescribed. Intravenous immunoglobulin has also helped difficult cases. Physical therapy is usually recommended to avoid muscle atrophy.
What is the prognosis?
The prognosis for polymyositis varies. Response to therapy varies from very good to satisfactory. Some patients have a more severe disease that does not respond adequately to therapies and are left with significant disability. Death is rare but may occur in patients with severe and progressive muscle weakness, dysphagia, malnutrition, pneumonia, or respiratory failure.