The last time I was on this forum I was in need of some hope and now I would like to share my story.
I was diagnosed with RRMS in June 2012 after quite a short period of symptoms. Following 2 MRI scans the consultant rang to confirm the diagnosis. I was shocked for a few days and met the consultant to ask some of the many questions I had. One of which was ‘Will I ever feel better than I do today?’ He was absolutely positive that I would. At the time I was suffereing with what I now know was anxiety, not sleeping or eating, feeling drained etc. Over the following weeks I appeared to relapse again (if I ever came out of the first one!) My symptoms kept getting worse and worse and I felt that I was only ever going to be in relapse. I had leg weakness, limited movement, pins and needeles, bladder dysfunction, fatigue, difficulty in walking - you name it, I felt it! Remission felt a very long way off.
After a routine appointment with my consultant in August I had a course of IV steroids, which began to work in 24 hours. I was amazed by the improvements and only wished I’d asked for the steroids earlier. I saw my new consultant in September. I was expecting to say ‘Next time I relapse I’ll have the steroids straight away - see you in 6 months’ However he was surprised by how severe my symptoms had been through the summer and recommended that I start on DMD’s. He gave me the choice of 2 and told me to go away and think about it.
I was surprised by his decision as I thought I would have to have more relapses before I was offered these and didn’t feel mentally prepared. The nurse showed me both sorts of injections and I came home feeling overwhelmed. In October, following a very stressful few weeks at work and a busy time at home I had a couple of days with some very mild symptoms. This was enough to scare me into starting the DMD treatment. I chose Rebif, using the Rebismart machine. I began the injections at the beginning of November. I have been very fortunate and had no terrible side effects. I take the injection at night and have some paracetamol before I go to bed. I get some redness around the injection site but nothing to worry about.
I have now been symptom free since the beginning of September, except for a few minor sensations in October. I have celebrated both of my children’s birthday’s, had a lovely family christmas, been on holiday, starting swimming lessons with my baby girl and do everything I did before. I thought it was the end of the world when I was diagnosed and that I would never be able to enjoy life with my family. But, if anything, life is better. I appreciate being well and make the most of it. I am always aware that I could relapse, but do what I want while I can!
When I was diagnosed I needed to hear that it might be alright. I can now say, at the moment, it is better than alright and I have the support and knowldge to cope when I do relapse. I hope this helps someone to see past a diagnosis, to a better time.
