Jan's MS story


I originally started noticing numbness in my legs and loss of control of my limbs in January 2011. I also had accompanying lower back pain. Because I'd had a back injury in the past everyone associated my symptoms with this. After months of tests to identify what was wrong with my back, doctors drew a blank. In March 2011, I had a gallbladder infection which really reduced my mobility. Whilst I was being treated in hospital I was referred to a neurologist who did tests including MRI scans. In the end it took about a year to be diagnosed.

No one discussed MS with me, but I felt it might have been the answer after people had said it could be that. I found out via a letter copied to me which was also sent to my GP. I waited to get the formal diagnosis at a meeting with the neurologist and an MS Nurse. I was devastated and very scared. I don't know anyone with MS. Both my sisters and their families have been told of my diagnosis and they have been very supportive. It felt very much that I had found out I had MS by eavesdropping on a conversation. Although, there is no easy way of being told you have a life- changing condition, I do feel that, as with most things in life, a direct and honest approach would have been much better.

I was particularly worried about the future, or possible lack of it. I was scared of maybe having to be in a wheelchair, giving up work, going into care or dying. The neurologist answered some of my questions and it was the MS Nurse who was able to explain to me the practical details of day-to-day living with MS, which I felt was invaluable. I wasn't given any leaflets and phone numbers, but I was directed to the MS Trust's website and encouraged to approach them once the news had sunk in. I didn't want to be bombarded with information. Most people don't know much about MS, or have even heard of it, except when they see people in wheelchairs and that's the first thing you think of when you are newly diagnosed. Being given details of the disease and how it works wouldn't really have helped until I came to terms with having the condition and could actually assimilate it. But a simple booklet, at the time of diagnosis, giving basic information and telling you where to go for more when you are ready, would have been great. I'm pleased that this is now available. Everyone's MS is individual and so is everyone's desire to know about their condition.

I am determined to remain positive. I wished I'd known how different MS can be for everyone. I've had to give up one or two hobbies but I'm making the best of life.

Jan is from Cheshire and works as an IT Analyst.

With thanks to MS Trust who provided this story.