[QUOTE=Kimba22;1493804]Hi hayleymarie,
Welcome to MSWorld. Sorry to hear of your diagnosis and being told you don't meet the criteria for Tysabri. I live in the US, but hope this information will be helpful. To start with, I'd ask him for clarification of what is considered a relapse.
Thank you for your very informative reply. I am using all the info i can for my appt tomorrow but i am really hoping once he sees me and has my records to hand. I wont have to battle it, i fear i dont have the energy!
I have dug out the Lemtrada booklet he sent me and a lot of things arent in there that people are now aware of. for exmaple, the need for annual smear tests because of the HPV risk. No note of that in the book, people are struggling to get these tests annually on the nhs so even though they are at risk they cant get the checks?
I dont know if drugs and doctor business is comission based here or something? Nobody seems to of advised its illegal or anything here i have mentioned it to? I just feel like they want me to have the cheapest treatment and kick me out of the door. I dont want to agree to the strongest treatment when i am only 6 weeks into my diagnosis. Yes its bad enough for me to require treatment (my vision is gone again in my right eye but i did run a 10K yesterday) but i dont want a treatment that has been described as 'cure me or kill me' by the head of neurolgy at my hospital.
I have made lists of things i want to discuss and the definition of disabling, what if i was a kept woman and didnt work? would none of my relapses be disabling because i dont work? He really got my back up with that but i dont want to go in with a bad attitude towards him if he is going to be responsible for my care for the forseeable future.
The critera he gave me as reason i couldnt get Tysabri seems out of date and not accurate so will see what he comes back with with that. Im assuming i dont have to decide when i see him tomorrow and will be able to have a think and of course ask yourselves on here.
Welcome to MSWorld. Sorry to hear of your diagnosis and being told you don't meet the criteria for Tysabri. I live in the US, but hope this information will be helpful. To start with, I'd ask him for clarification of what is considered a relapse.
Thank you for your very informative reply. I am using all the info i can for my appt tomorrow but i am really hoping once he sees me and has my records to hand. I wont have to battle it, i fear i dont have the energy!
I have dug out the Lemtrada booklet he sent me and a lot of things arent in there that people are now aware of. for exmaple, the need for annual smear tests because of the HPV risk. No note of that in the book, people are struggling to get these tests annually on the nhs so even though they are at risk they cant get the checks?
I dont know if drugs and doctor business is comission based here or something? Nobody seems to of advised its illegal or anything here i have mentioned it to? I just feel like they want me to have the cheapest treatment and kick me out of the door. I dont want to agree to the strongest treatment when i am only 6 weeks into my diagnosis. Yes its bad enough for me to require treatment (my vision is gone again in my right eye but i did run a 10K yesterday) but i dont want a treatment that has been described as 'cure me or kill me' by the head of neurolgy at my hospital.
I have made lists of things i want to discuss and the definition of disabling, what if i was a kept woman and didnt work? would none of my relapses be disabling because i dont work? He really got my back up with that but i dont want to go in with a bad attitude towards him if he is going to be responsible for my care for the forseeable future.
The critera he gave me as reason i couldnt get Tysabri seems out of date and not accurate so will see what he comes back with with that. Im assuming i dont have to decide when i see him tomorrow and will be able to have a think and of course ask yourselves on here.
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