The random rants and meaningful musings of seven digital divas (who happen to have MS)
Saturday, July 28, 2007
Well I went to the neuro earlier this week. He said tysabri was an option for the future, however he didn't think it was necessary or suitable at this minute. He also said I was doing really well physically (which I know) but he understood that the fatigue was extremely limiting, and therefore lowers my physical ability and that he thought maybe another MRI scan would be worth it just to see what was happening inside, and then see where we go from there.
Although I didn't get exactly what I wanted (as I expected) I did come away happy and reassured that I am being cared for, my treatment is thought about and I am taken seriously. It was also the first time I felt I faced my prof as an adult. I was 17 when I was first referred to him and still at school and so it never occurred to be to discuss anything with him, and certainly not to question him... I'd spent the last 17 years listening to 'adults' (or teachers) and doing what they told me. PLUS my mum insisted on coming to all my drs appointments (yes, that p*ssed me off) so most of the discussions were between doc and mum.
So after 4 years I've eventually prised my mum from my side (she thinks I'm making the wrong decision but she respects my decision... it only took 4 years for me to get there!). However, now she's arguing with me over whether to transfer to Newcastle and stay with the prof, or to stay in Carlisle and get a new neuro... who will be working under the prof anyway! She wants me to go to Newcastle, I still haven't made a decision but leaning towards Carlisle... watch this space! Whatever I do will be my choice, the hard part is drumming into my mums head that I have to make this decision based on what makes me happy, not what makes her happy. After all, this is my illness and its up to me to make the decisions that effect the course of MY life. Have you noticed that once you turn 18 parents stop trying to encourage you to think for yourself, and instead try and take over... because they know that they cant make your choices anymore.... or has that just happened to me because I was diagnosed with MS at 18?