almost a week since i got my diagnosis and had been told last week to go away, research the options and decide what i wanted to go through, both neuros i saw wanted me to look into Tysabri or however its spelt, which i did. I found it looks perfect for me. I cant inject myself, memory like a gold fish so taking meds isnt a route i wanted to go down. I've read low side affects and high % of reduction in relapses. Its what i wanted all round. Rang the hospital to advise them of this and got a phone call from the MS Specialist to tell me i dont qualify for it so they cant get the funding? He asked me to give a brief account of events which i did, honestly as i would never lie. To be told it doesnt sound like my relapses have been disabling enough? Apparently because i only had one full day off work (followed by several days of managing half a morning and having to leave because i couldnt see) he will have trouble making a cause of it being disabling. Im furious. Why would the head of neurolgy and his number 2 advise me to go down this route if there was an chance i could never have it? Also, i went to A&E, was told they couldnt find anything, my docs said it was vertigo and then weeks later when i saw a neuro, she declared me 'better' so because i didnt sit at home wallowing i cant get the treatment i want? I sit at a desk. My best friend is my manager, i was picked up and dropped off by other members of staff, relinquished half of my duties because i wasnt able. But i wanted to be there, i couldnt afford to be off work. I just feel livid that for trying to carry on, im being punished.
Im seeing him 21/06, ill take all my notes with me and hopefully i can convince him that just because i havent sat at home and tried to continue to live my life (i have a 7 year old, i cant cease to function even i want to!) that my symtpoms and relapses arent milder than he thinks?
Has anyone gone through this? im losing the energy to fight and i dont want to start this journey on a shitty note!