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Diagnosis: a personal view

Open Door - Spring 2002 pages 4-6

As I sit down to write this article it is ten months since I was diagnosed with relapsing remitting MS and around four months since I started to feel 'me', my old self, normal (what ever that is) again.

For me life with MS truly started at the time of diagnosis but I had known that it was a possibility for nearly three years since I experienced what I now know to be my first relapse. With the benefit of hindsight I am glad that I had this time to come to terms with the possibility.

Three years ago I was sitting at my desk preparing for a meeting later that day when I became aware that my leg felt odd. From time to time it would feel either red-hot or freezing cold on the inside. To touch it felt no different. A few days later I then became aware that I couldn't feel it at all, although I could run, walk etc. as normal. By the time I decided that I needed to see my GP I could sit in a hot bath and half of me would be freezing cold.

It was quite a shock when, a week later, my GP advised me that I needed to see a neurologist and if I had private health insurance it would be a good time to use it to expedite things. I was lucky, I was able to do this and a week later found myself in front of a neurologist undergoing a neurological examination, numerous blood tests and a MRI scan. I was then quite surprised to get a call from the neurologist advising me to bring my husband to the follow up appointment. So convinced was I that there was nothing serious wrong that I insisted that this was a waste of time and went by myself.

During the long chat I then had with the neurologist I was told that my symptoms were as likely to be the result of a virus as it was MS (and if so may take up to a year to resolve). We had a long discussion about whether I could live with the not knowing or with having a lumbar puncture, which would be the final piece required clinically at this stage to confirm my diagnosis.

At this point I should mention that as a nurse myself for many years and then working in the pharmaceutical industry in the research sector, I would have predicted that my reaction would be 'yes'. I would then have wanted to know everything I could and to read every book and article I could lay my hands on. To my surprise I just innately knew that I couldn't deal with any more information and tests and wanted to opt for the 'let's wait and see' approach. I did not want what I perceived as the label of MS any sooner than I had to and the implications such a diagnosis would have. My initial thoughts were about having to face up to the possibility of not being able to live the life I had taken for granted, becoming a burden on my husband and family, not being able to be there for my daughter, people would see me differently etc.

So that is what I did, much to my family and friend's surprise, and over the next two years life carried on as it always had done. I did have a number of 'odd' experiences, which I put down to just one of those things. My leg did get back to normal but it was noticeable that when I got tired the symptoms would return, although never as severely.

Then at the beginning of last June things started to happen again. Overwhelming tiredness like I had never experienced before. I ran a bath for my daughter, who at the age of 5, and implicitly trusting me, got straight into and then got out again very quickly as it was freezing cold. I had thought it was too hot and had spent ages cooling it down! To this day she always checks first.

As I was starting to feel more and more odd I decided once more that I should go and see my GP, not for one minute thinking that this was anything that the neurologist would be interested in. Once again I was advised to see the neurologist as soon as possible.

A few days later I woke up and was unable to move without being sick. My eyes did not seem to focus properly and I felt so tired. Concerned, my husband called the GP at 7am to be told by the out of hours service that there was nothing they could do and, as the GP was off duty, to call back in 15 minutes if I wasn't feeling any better. My husband duly called back and luckily it was the GP who had seen me a few days earlier who came out within 10 minutes.

In the meantime, feeling very frightened and physically the worst ever, I had to deal with my 5-year-old standing by the side of my bed pleading with me between sobs not to die.

Life for the next few days was a blur. Mum had to come and stay with us. My balance got worse, (with medication I was able to get up but would stumble around bouncing off the furniture), I developed a weakness down the left side of my face, I lost my sense of taste, I couldn't tolerate the sunlight and I was so tired. I talked to my neurologist who decided to admit me to hospital, booked an MRI scan and warned me that if the scan was clear a lumbar puncture would be required. He was excellent and I knew before he even broached the subject that this was looking more and more like the MS I was dreading.

It was at this point I picked up one of my medical books and read a case history of an MS patient and realised that it could be me.

In hospital, the first thing that happened to me was yet another MRI scan. The look on the radiologist's face told me that she had definitely seen something. I knew she couldn't comment so I was not going to ask. It was at this point that I finally acknowledged the other fear that I may have brain tumor and not MS.

So in some ways it was a relief when later in the day the neurologist came to see us and said those word 'you have MS'. It wasn't a great surprise but still a shock, and for me there was relief that that's all it was. My husband and I had a long, long chat with the neurologist and this time asked lots of questions, many of which we were to ask again at the follow up appointment to my discharge. It wasn't perfect, in that there wasn't an MS Nurse Specialist there, (in fact not one of the nurses on that ward ever acknowledged my diagnosis), but for me it was what I wanted. Space and time both with my family and myself to start to come to terms with the fact that life was never going to be the same.

During my stay, one of the neurology house officers came and asked me if she could talk to me, as she had never met a patient so recently diagnosed before. She was about my age with a little girl the same age as my daughter. Inadvertently, by asking me questions about things that she imagined she would be thinking about in my position, she made me start confronting issues. This wasn't going to go away and if I was going to move on I had to start by accepting the diagnosis and adopt a positive attitude. I hope that in addition to helping me, the conversation has helped that doctor in her approach to other newly diagnosed patients.

Following my discharge, I did suddenly feel very isolated, although I have very good and supportive family and friends who were all trying hard to be positive despite hurting themselves. I felt that I was just left to wait for the next relapse. I had to visit my GP shortly after coming out of hospital and walked into his surgery assuming he would be aware of my diagnosis. I got quite angry when there was no acknowledgement and eventually told him on my way out. By the time I went to see my neurologist, I was seething as well as in possession of a very long list of questions. Having sat patiently through all my ranting and raving and having answered all my questions, he explained that MS is a difficult condition for many healthcare professionals to deal with as it is not something that they can do anything about to cure. Much as in the same way that if you talk about your diagnosis to a lot of people, they will only see the wheelchair image of the person with MS. Armed with this information and the reassurance that everything I was feeling was entirely normal for someone having just been diagnosed I resolved to try and get on with things.

It has taken a while to get to this point, I didn't tell people outside our close friends and family about my diagnosis until I was fit and well again, and to this day I am still selective. I have been, and at times still am, angry. I remember looking at a group of mums in the school playground and thinking you really don't know how lucky you are to be fit and healthy. I've felt sorry for myself and panicked about silly aches and pains thinking they were the start of another relapse. But for me, if it hadn't been for MS, I am not sure I would ever have sat back and taken stock, decided what really is important, developed the confidence to be myself and make the most of my opportunities. I could be run over by a bus next week.

Like MS, life is unpredictable. None of us knows what it holds in store.

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