James West

Country: UK
Age: 33
Type of MS: Secondary progressive
Profession: Public relations consultant
Year of Diagnosis: 1997



The first MS symptoms I noticed were that my legs would spasm after playing football and I had a loss of sensation in my left foot. After that I got a lot of tightness in my stomach. I thought I had appendicitis and went to hospital. They sent me to a neurologist, who diagnosed me with MS at age 23. It might have been easier if it had been a disease with a more understood prognosis, but the neurologist basically said: "there’s nothing we can do."

After my diagnosis I had relapses every nine months which were treated with steroids. In my late 20s, I started limping then dragging my left foot, then that transferred to my right leg and I got stiffness in both legs.

MS has affected every part of my life but I have a loving, supportive wife and family. Several friends have also been supportive but most people don't know how to talk about MS and avoid the subject. I had to reduce the number of days I work to 4 and then 3, due to fatigue, but the two employers I have had over this period have both been very supportive and understanding.

I have been on a variety of medications for MS. I used Avonex for nearly three years, then a neurologist suggested I take Rebif, as I was still experiencing disabling relapses. Within three months on Rebif I got flu-like symptoms and became depressed, irritable and aggressive so I came off it. I had three months without drugs and went back to being myself. But I realised I was seriously ill. My legs were very stiff, I had fatigue and bladder problems and I had another relapse at this time.

I was offered a drug called Mitoxantrone, a chemotherapy drug, used to treat breast cancer. Potential side effects include leukaemia, heart failure and infertility. The long term effects aren’t really known, but in the short term it can stop MS progressing. I thought it over with my wife and family and decided to go for it. I want to keep mobile for as long as I can because I enjoy life and there’s more I want to do. If I die of heart failure, I die of heart failure; it’s worth it to try to prolong my mobility for a few years.

After the first time I took it I was in hospital for ten days. But now I feel healthy. It hasn’t greatly affected my disability but it has completely reversed my fatigue. I’ve put in a request to increase my hours at work. It has really given my energy and confidence a boost.

My walking is bad for a man of my age, although it has improved since I’ve had chemotherapy. I used to be a very active person - I ran, played football and golf. I now lead a much more sedentary lifestyle and this is hard to deal with. But I do like to go for short walks and do low impact physiotherapy at home when I can. Managing stiffness in my legs is difficult on a day-to-day level because there’s nothing I have found that stops it. Bladder and balance problems have also got progressively worse with each attack. I now walk with a stick and am about to have Botox treatment for my overactive bladder.

The hardest thing about MS is psychological: knowing that you live with a condition that could make you very ill, which is currently incurable and for which treatments are quite limited when you get into the Secondary Progressive stage. Having MS can feel like an indefinite prison sentence and it’s really difficult to come to terms with that.

I talk to other people with MS through the UK MS Society web forums and have started volunteering for the Society on a sporadic basis, sitting on judging panels and offer myself up as a case study for media interviews. My advice is to keep well - eat good food, drink lots of water, consider taking vitamins, rest properly, exercise as much as possible, try and avoid stress at all costs and importantly, try and enjoy life!


UK MS Society