Multiple Sclerosis - Reactions to the Diagnosis

A patient always knows better than anyone else how he or she is feeling, but will not usually know how to interpret these feelings. In my own case, I was first diagnosed with multiple sclerosis in October 1988. Although the news was very unwelcome, I was not very surprised. No one knows how your own body feels as well as you do yourself. I can now see that signs and symptoms of multiple sclerosis had been appearing for over 5 years, even though I did not know it at the time.

When I was diagnosed, I was partly prepared for bad news but was completely ignorant of what to expect from the diagnosis. I knew Jacqueline du Pré, one of the greatest cellists of the twentieth century, had died recently from the disease while her reputation was at an all-time high, but I had no idea whether her case was typical or not. I was ready to fight the disease that had invaded my body but I didn't really know what was going to happen next. It seemed the illness was little known or discussed, compared with other "big name" killers such as heart attack, cancer or AIDS.

The doctor who told me I had multiple sclerosis never mentioned the disease by name again, but that a treatment would probably be found within 5 years. He said the signs and symptoms of multiple sclerosis would come and go over the years, but I would have a normal life expectancy, and wheelchairs were not usually needed. Otherwise, I was told there was no way of knowing how my condition would evolve and effectively I had to hope for the best.

Now, over 20 years since I was first diagnosed with multiple sclerosis, there is almost too much information available from books, the Internet, handouts and press reports. A lot of this information is confusing and contradictory so a quick start guide to multiple sclerosis would be useful to newly-diagnosed patients, their families and friends.

When they are first diagnosed, people with multiple sclerosis need a clear explanation of what the disease actually is, and their families and friends need this information just as much. This information needs to be clear and positive, because multiple sclerosis is not fatal in most cases and there are steps that can be taken to manage the signs and symptoms of multiple sclerosis.

There is a tragic minority of people with multiple sclerosis who will find their battle with multiple sclerosis will be tough (much tougher than mine has been) but even so there is a need for some fresh ideas for them to try. Even the most disabled have sometimes recovered by trying new treatments.