@hayleyc85 

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hayleyc85

Treatment Options

Hi All, 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!
@TracyD

@hayleyc85 where are you located ? That information is bullshit if you're UK based :-(

@hayleyc85

@tracyd im in Hull. Hes told me i have to have two disabling relapses to meet the critera for this drug. and im not happy about being tricked out of it by him questioning me over the phone and deciding there and then that my epsiodes werent bad! Fuming!