A multiple sclerosis case story (Anonymous)

I had my first ‘attack’ at the age of 19yrs. I lost the use of my right arm and leg and I couldn’t speak properly. I had a CT scan and was told that I had had a transient ischemic attack (TIA)/ mini stroke. I was told to stop smoking, not to drink and make some other lifestyle changes. There was so much I wanted to do in life and here I was being told to ‘take things easy’.

About every 12-14 months I would end up back in the Accident and Emergency department with another TIA, get admitted to a stroke ward, make a nearly full recovery after about 6 weeks and get sent home again. I almost felt like a fraud when I looked around the ward to see that I was the only person who seemed to be making such an amazing recovering. One patient got really upset and asked me what he was doing wrong because he wasn’t recovering as fast as me. I did think that perhaps I had been wrongly diagnosed and I had something else wrong with me, but then I had been given loads of tests and scans and I thought ‘they’re the experts’.

This pattern of almost annual hospital admissions went on for over ten years. I was told that one day I would have a massive stroke and perhaps I wouldn’t recover from it. I was really scared. Every time I felt a twinge in my body or a headache I would think ‘Is this it, is this the big one’? I was suffering from severe depression as a result of all the stress and worry and my wife and family were finding it increasing difficult to cope. Even now it makes me feel angry and upset when I think about what I went through.

Eventually, I thought enough is enough and I need some answers. I paid to see a neurologist privately and was admitted to hospital for more tests and scans. The outcome was ‘probable multiple sclerosis’. I know it sounds weird but I was relieved and scared at the same time. I knew a bit about MS and the diagnosis did seem to explain my symptoms a lot better than TIA’s.

In a way it was a relief because I wouldn’t have to worry about having a massive stroke, but of course the ‘new’ diagnosis brought with a hold load of new worries and questions. Initially it seemed as if I was being told to ‘get on with your life, there isn’t anything we can do’. I wasn’t even given the details of any organisations that could provide support or information – I had to find this out through the internet. It wasn’t until I saw a neurologist who specialised in MS that I felt as if I could do something to help manage my condition and there was help and support available.

I was offered the opportunity to go on beta-inteferon or a so called ‘disease modifying drug’. I found the decision to start this treatment quite easy to make; I was willing to try anything that offered the chance to reduce the severity of the ‘attacks’ and avoid further hospital admissions.

It was hard learning to inject myself and the ‘flu-like’ symptoms I experienced were quite severe and I did ask myself whether it was all worth it. The night after an injection I would get a really high temperature and start shaking and sweating. Fortunately, this did improve and I don’t get such a bad reaction anymore. I also get redness and soreness around the site where I inject so you have to change where you inject quite often. Sometimes my family have to do it for me, but overall it’s OK.

Once I was diagnosed with multiple sclerosis, at least I knew what I was dealing with. I know that I my mobility may get worse and I could end up in a wheelchair, but at least I have done most of the things I wanted to do if this does happen. My advice to anyone is a similar situation is to listen to yourself, you know what you can or can’t do, and be realistically optimistic about the future.