I was diagnosed with rrms in January 2012 after a nasty episode in August 2011 which left me with severe right sided weakness and an episode of Optic Neuritis in December 2011, the effects of which are still going strong! Over the past couple of weeks I have been experiencing extreme dizziness to the point of nausea, loss of hearing in my right ear and loss of sensation on my tongue. Looking at my medical history it is clear I have had other episodes in the not so distant past including pins and needles in my hand starting in July 2010 and a severe bout of dizziness and vomitting in December 2011 which lasted about 6 weeks.
I saw my MS consultant in January, prior to this I had been seeing a neurologist who said that although he thought it was MS he wanted me to see the MS specialist before any diagnosis was discussed (my referral was then of course lost in the ehter for a little while but thats another story!) The MS consultant discussed treatment options and said that he would like me to start Tysabri, I had already done some research and agreed that I wanted to do this.
The consultant has referred me to an MS nurse and I have my first appointment with her next week. As far as I know plans are underway for me to start Tysabri as soon as possible. I understand every person is different and that sometimes there is little that can be done to alleviate the symptoms but I feel a bit like I have been left in the dark (literally in terms of my vision!) It’s really hard getting used to all of these symptoms and not being able to work or get about very much means time is really dragging, so although its only really been a matter of weeks it feels as though I have been waiting to see the nurse for months!
My question is what should I be expecting now? What will happen at my first appointment with my nurse? Will there be plenty of time for me to ask questions or are we allocated small amounts of time like at GP surgeries? Will this be the appoinment where I am tested for the JC virus? and if so what does that test involve? I have quite a phobia of needles, I think the lp helped me get over it somewhat (if I can get through that I can manage most needles) but I like to be prepared!
I’ve spent lots of time doing research but at the moment everything just feels completely unknown and that is a little scary. Ive spent a lot of time reading the forum and have found it really useful so I’m hoping someone can help to calm me down!
Thanks in advance