From the beginning...
My first symptoms, double vision (optic neuritis), came to me when I was just 20. As a young French woman, living away from home in Chelmsford, England, and still learning the English language, it was a frightening position to be in.
I was working as a French assistant. I was lucky and had a doctor who loved France. He could see my situation and looked after me well whilst I was away from my home and family. When he examined me he showed me the definition of MS in the medical dictionary to prepare me for what I may later be told. The doctors did not want to cause me more distress, just wanted to help as much as they could. They did not actually ‘diagnose’ me, though they made it clear that they suspected I had MS. I read the definition and told the doctors that I thought it was a “wait and see” situation.
Unfortunately, not all the doctors in that practice were helpful. One morning when I went for my cortisone injection, prescribed by my nice doctor, I walked into the room and saw a doctor whom I did not know. He spoke very slowly in short sentences. I found it patronising and felt very uncomfortable. It was like a red rag to a bull! I told him not to talk to me like that. What was happening to me did not make me feel confident about my abilities and he was making me question them even more by talking to me like this. I started thinking I was going mad.
The doctor in question did not like being told he was patronising. He reacted badly, and injected me at a right angle without cleaning the area. So, I calmly said that he knew very well that it was not the way to do this. I will never forget how I was made to feel that day! However, I was glad I could answer calmly in good English. It reversed my feelings - I suddenly felt I was in control and not going mad. It made me want to fight MS.
By the next time I saw my nice Francophile doctor, I had realised that the cortisone was not having any effect, except for making me fat (which as a twenty year old young woman I did not like at all). I therefore decided not to take it anymore.
Then a strange coincidence happened. My double vision got better on my 21st birthday. It was also the same week I was due to go for another a hospital appointment. When I got there, I told the neurologist that I just wanted to have a life. I wanted them to leave me alone, but said I would return if “it” came back.
Later that year, when I had returned to France for Christmas, I went to see my French family doctor. I translated much of the information I had gathered in English to French for him. We agreed that we should wait for the next symptom to arise before taking any further action. He had known me all my life, and understood how I felt. He also understood we would only know if it was really MS if I had another attack.
I never put it out of my mind. Soon I had my second attack. The MS was back and I was still in France. It was unlucky that the French doctor who had looked after me through all my childhood was away on leave. The locum who was seeing his patients had not read my notes and threw me out of his surgery. He did not take me seriously.
So, I had to wait for the third attack to appear before I could get a diagnosis. By now I was back in the UK, in Lampeter, Wales. At this time I was Lectrice and therefore frequently visited the collage library. A new acquisition "Living with Multiple Sclerosis" by Dr Elizabeth Forsyth (Faber & Faber) greeted me as I walked in one fine day. It was the book for me. It was serendipity.
After that, for a few years, each time I went to see a doctor, they always asked me how I was and seemed very caring. It is clear in retrospect that, all the doctors I saw had read my medical notes from Chelmsford. My folder was really full to bursting. What a relief that everything was kept!
It was a few years before any symptoms returned. When it did it was what I called my ‘marshmallow arm’. Then, I was a student in London, completing my teacher training. I had time to read the book by Dr Elizabeth Forsyth again. It was very helpful at this hour of need!
I was sent to National Hospital of Neurology and Neurosurgery in Queens Square, London, for my diagnosis. It only took three days! This was probably because they could see I was feeling in control and already strongly suspected MS. I had also explained I was a hurry; I had three long essays to write in the next two weeks. They were really supportive, could see it was important to me to be diagnosed fast.
When I had the diagnosis I told my family and friends. Some had strange reactions – not always very helpful ones. I found it very important to remain cheerful. A good sense of humour is needed for living with MS.
Since the diagnosis I was also prepared to adapt my life, but I was going to live it too. I tried various diets and evening primrose oil.
I kept seeing the neurologist in London. There were only limited facilities for neuro-physiotherapy then, but none for me as I was still walking to work, which was seen to be enough exercise in the doctor’s eyes. In addition to this, my neurologist was not keen on me visiting the Royal Homeopathic Hospital just next door. Alternative and complementary therapies were not so accepted then. However, I decided to seek acupuncture and homeopathic treatment independently. Once, I showed my neurologist the tablets I took. He took one of the bottles and poured the tablets straight into his palm thereby contaminating the whole bottle (you should not touch homeopathic tablets). He was such a sceptic, I decided to tease him a bit so told him to take two. To my great delight he did, and then asked what they would do. I told him that it would stop him farting! I still find it hilarious and every time I find myself in a difficult situation talking about the treatment of MS I tell this story as it makes me laugh out loud.
On a more serious note, to keep positive I also decided to help in MS research. In particular, in 1991 there was an opportunity to help with an experiment on muscle stimulation at the MS Research Unit in Bristol General Hospital. I enjoyed helping, and liked walking up from the bus station. It became a pleasant routine. It convinced me that regular exercise could improve your walking or maintain it. It is also pleasing to see science progress and be part of it. This gave me strength.
However, in 1992, I had to abandon some work that I was helping with as the MS Research Unit was threatened with closure. It was as if someone was ripping away a good book from my hands! So, I started writing letters; this was one of my first campaigns. It worked for a year, but then in 1993, the effect of the campaign was already running out. One day I found myself crying in a meeting. Everyone seemed to have different agendas or wanted to leave! And since then, not many people have been able to help the MS Research Unit!
In 1995, I retired from my main teaching work and worked more for the MS Unit, as I could not fully retire from MS! I continued over the years to help with a whole range of experiments and also raised some funds. In addition, I started helping the research team by surfing the Internet to find the latest scientific and medical information on MS. Then in 1999, I started a new MS website and began administering an MS email list for PwMS world-wide.
When MS First won a prize the RIMS (Rehabilitation in MS) conference in 2000, I was really pleased. It is great to know I had contributed to something that others also saw to be worthwhile. MS First really does give hope and improves the quality of life of people with MS.
Recently a new charity is helping the MS Unit and I have built their website: http://www.ms-research.org.uk. I am very hopeful as the research physiotherapist can work and has enough to present at conferences on the topic of falls and balance with MS.
My neurologist now prescribes me with campaigning, physiotherapy and websites. He does not feel there is better than that in my case!<