Jeremiah Johnston-Sheehan, a successful architect, was devastated when told he had multiple sclerosis.
But four years later, he discovered that he had been misdiagnosed.
In fact, he suffered from a treatable condition called Hughes syndrome. Recent research shows there could be thousands of people like him who have wrongly been told they have MS.
One of the lowest points for me was finding myself on a hospital ward surrounded by people with end-stage multiple sclerosis. I was 42 and had always taken care of my health. Now I was lying in this bed, wondering if I shared the fate of the people around me.
They were partially paralysed, very ill and unable to look after themselves. I felt as if I was on death row.
I first noticed symptoms almost five years ago, while working on the design of the Rainforest CafÈ in Piccadilly, London. I began to feel incredibly tired and started having problems with my eyesight.
But the real problems began a few months later while on a break in Scotland. I was walking in the Highlands when I suddenly felt exhausted. I felt as though I was becoming paralysed.
I had suffered from asthma for many years. I arranged to see my GP who referred me to a lung specialist in London, but he ruled out asthma.
I began to have double vision, which the doctors diagnosed as optic neuritis, where the optic nerve becomes inflamed. It was terribly painful.
I had trouble walking and kept losing my balance. I lost the feeling in my feet and hands, which tingled continuously with pins and needles. The doctors said I had 'drop foot' where I couldn't lift my toes, but they didn't know what was causing it.
After about two years, I was referred to a neurologist at St Thomas' Hospital in London.
By that point, I needed a stick to help me walk. I had done lots of research on the internet into my symptoms.
The neurologist did several tests, including an MRI (magnetic reso- nance imaging test) on my brain. He suspected I had MS, or possibly a brain tumour.
When the test results came through, my neurologist said that I didn't have a brain tumour, but that there were white markers on the scan - lesions. He said I had probable secondary progressive MS.
MS is an auto-immune disease that attacks the central nervous system. It affects about 85,000 people in the UK. About 50 new cases are diagnosed each week.
The disease can be mild and simply cause numbness, or it can cause paralysis and incontinence. In severe cases, MS can kill, through secondary infections such as pneumonia.
My diagnosis meant that I would get progressively worse. There is no cure, although a drug called Beta Interferon can slow the disease.
I had read enough about my symptoms to be half-expecting what I was told, but I was still shocked. I just kept feeling that the diagnosis wasn't quite right.
I was told Beta Interferon was not available on the NHS, so I paid about £700 a month for it. I had to inject myself with the drug three times a week.
A few months after starting on the drug, I lost my job.
My wife Pamela and I don't have children. We just had each other. I had to rely on her and she was incredibly strong.
Then came a glimmer of hope. At the time of the MRI, they had done other blood tests.
My neurologist called me back to the hospital. After reexamining my test results, he told me he'd noticed that one of them had an unexpected result.
It showed I had something called antiphospholipid antibodies, or sticky blood. He said the result should be checked by a specialist. I was referred to a rheumatologist at St Thomas'.
After this, I found on the internet that 'sticky blood' was called Hughes syndrome and made the blood clot. Many symptoms matched mine. The condition was also known to mimic MS.
Within four hours, I had read enough to know that having this and not MS would be good news. I knew that sticky blood responded well to inexpensive medication.
As there are so few experts in this field, the waiting list was six to eight months. I had to have the blood tests redone.Dr David D'Cruz said my blood tests had shown the presence of antiphospholipid antibodies and that in his opinion I did not have MS but Hughes syndrome.
He tried me on a number of anti-coagulant drugs and after a few weeks found that Warfarin was the best for me.
Within a few days I no longer needed the walking stick. The feeling returned to my hands and my drop foot went, so I stopped falling and stumbling.
The pain in my eyes disappeared and gradually the fatigue alleviated. A week later, I felt well. After four years of being in the dark, I had at last got the right treatment.
It is almost a year since I was told I had Hughes syndrome. I am working again and feel so much better. I know I will be on medication for the rest of my life, but I just feel grateful to have another chance at life.
Living with Hughes syndrome by Triona Holden is published on September 20, by Sheldon Press, priced £6.99.
The Hughes Syndrome Foundation, The Rayne Institute, St Thomas' Hospital,
London, SE1 7EH. (020 7960 5561 or www.hughes-syndrome.org)
©2002 Associated New Media Limited