@hayleyc85 

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hayleyc85

fighting my case for Tysabri

Hi, Just wondering if anyone has fought, sucessfully or not, to get the treatment of their choice having been told they do not meet the critera? Thanks
@hayleyc85

a sneaky MS specialist rang me a few days after my neuro had told me to go and decide what treatment i wanted. Tysabri had already been mentioned to me twice previously and seeing all the info online, i had decided that was what i wanted. Im not seeing the ms specialist until June but he rang me to sound me out about what had been happening to me and what i wanted. He has advised me because i continued to come to work during my relapses that they do not class as 'disabling' so i dont meet the critera. my points are- I sit at a desk, yes i came to work but this is because i was terrified to be alone, my bosses picked me up from home and took me home at the end of the day. I litterally sat at my desk like a zombie with most of my duties relinquished but felt it better to be with people when walking into things and being partially blind A&E and a neuro appt 2 weeks later both told me 'there is nothing wrong with you' so of course i had to come to work, what would my sick note say? i can 100% argue my first relapse was disabling, im going to have trouble i think with my recent one. Sometimes i cant see, and the nerve damage from my initial relpase in November means i cant use my left hand as well as i can, at home, i drop things, spill hot water on myself, drop pans, smash glasses. At work, i am much less of a danger to myself and my disabling qualities at work are the congintive side, memory loss, confusion, irritability, not able to learn new things or remember old things. At home i am a mess, cant get dressed without falling over. How, or CAN i argue that both of my relapses are disabiling but in different ways that doesnt quite correlate with their wording of disabling? I will fight my case, i just want to know it can be done before i spend the next 4 weeks putting a case together ready for my appt. Thanks

@hayleyc85

Strange, this is a snippit from the info i have been given. E.1 Starting Criteria All of the following criteria* must be met. The patient:  has had two or more disabling relapses in the past year  has one or more gadolinium-enhancing lesions on MRI or increase in T2 lesion load compared with previous MRI unless comparator MRI is unavailable or assessment of gadolinium-enhancement is unreliable as the patient is treated with steroids at around the time of scan.  has had no previous disease modifying therapy OR is receiving treatment with beta interferon and does not meet the agreed stopping criteria. and then the word 'disabling' is as follows, but i dont agree Disabling Relapse A disabling relapse is defined as any relapse which fulfills one or more of the following criteria:  Affects the patient’s ability to work  Affects the patient’s activities of daily living as assessed by an appropriate method  Affects motor or sensory function sufficiently to impair the capacity or reserve to care for themselves or others as assessed by an appropriate method  Needs treatment/hospital admission. my left side is already about 50% crappier, im not willing for another massive relapse to risk another one of my limbs giving up entirely. Just wanting to know if i have any chance at getting what i wanted. Lemtrada is on my radar. Im waiting to see if im high risk of the JC virus. My neuro described Lemtrada as the 'cure me or kill me' option, not sure im quite there yet. I wanted to go down the medium strength drugs for now. Eager to hear everyones thoughs @orlando27