@hayleyc85

Last reply

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

@TracyD

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

hayleyc85

@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!

Stumbler

@Stumbler

@hayleyc85 , the following link is the present guidelines for prescribing the various DMDs:- https://www.england.nhs.uk/wp-content/uploads/2013/10/d04-p-b.pdf Have a read through and see which treatments you should be offered. Once you have the full facts, then you should be able to argue your case.

hayleyc85

@hayleyc85

aww man Stumbler thats a lot of info to take in and for me to forget immediately. Im going to get my boss to write something about yes me being at work but signficantly being worse at my job. i cant believe thats what its based on! being a mum at home is 100% more work than my job!

Stumbler

@Stumbler

@hayleyc85 , speed read the majority of it, but concentrate on what is said about the treatment option you want i.e. Tysabri. Then say that you want the most efficacious DMD available, as you're not going to be fobbed off with the lesser efficacious treatments..

hayleyc85

@hayleyc85

i cant even see that drug on there? is it the beta infernon? sorry for being a dumbass

hayleyc85

@hayleyc85

i cant even see that drug on there? is it the beta infernon? sorry for being a dumbass! I've had two MRI's 1st one had brain leisons and second one showed those healing and new ones appeared. also have them on my neck and spine.

Stumbler

@Stumbler

@hayleyc85 , here's the NICE guidelines for Tysabri, which is also known as Natalizumab :- https://www.nice.org.uk/guidance/ta127 And, you're now the prettiest dumbass I know. :wink:

hayleyc85

@hayleyc85

got it. just cant see the 'critera' im meant to meet in relation to that drug. its probably me and my wonky eye :) ill print it off and have a good read later

hayleyc85

@hayleyc85

haha thanks :) I dont know if i have that Orlando? i have RRMS. first epsiode November and second in Feb but both consultants i have seen since feb had advised it had already caused significant issues and now i have proof i've got more leisions. I dont understand why they would give me that as not only an option but one of them only gave me info on that? Why give me it if i was never going to be allowed it? Ah well. im pretty good at arguing. Guess ill just have to do that. And get my boss to say how shit i am at my job! how do people afford to stay at home off sick if they are told by a number of proffesionals that nothing is wrong with them? grrrr

TracyD

@TracyD

@hayley the presumed 'severity' of a relapse is NOT part of the criteria for ANY of the treatments merely the occur ace of them and the appearance of new lesions. It is the presence of active disease and number of relapses. Is your neuro an MS specialist or a generic 'head tool' type neuro?

isaacson72

@isaacson72

I don't know anything about the system in the UK (and from the sounds of it, I'm glad of that - what a nightmare, I'm so sorry you are going through that) but I wanted to point out about your memory & forgetting to take things... my memory is crap too, I forget stuff all the time, but I don't forget the shots. They're easy to remember (m-w-f mornings) but more than that, I have the copaxone app on my phone so it reminds me when to inject. It also reminds me when to order new shots. It also keeps track of where I do the shots and tells me where to do them next. I've only been doing this now for 4 months but already it's becoming part of my routine and I find I usually end up doing the shots before my phone has reminded me. I'm sure any oral pill like tecfidera must have the same sort of thing, or you could set your phone up (or computer) to remind you. I live by my alarm app too for everything -- except apparently to bring my contacts to work today because I have an eye appointment this afternoon that now I have to reschedule because I don't have my contacts. Whoops.

hayleyc85

@hayleyc85

i hate needles though! the thought of having to inject myself upsets me more than having MS!! @tracyd the 2 neuros i have seen, once they both stopped doubting me, both seemed OK. but they sent me off with this drug info and i was happy that i could take it and i would be OK. my good friend also has MS and she has had good experiences and good results with this. So the head neuro told the MS specialist i wanted this drug, and he rang me, quizzed me and told me no, i wont get the funding. Not seeing him til 21/6 but i want my guns loaded if he is BS ing me. especially after the head Neuro twice gave me this massive speech about being able to prescribe whatever drugs are needed, there is no cap on money. Im so confused and just like when i had my son, and in my initital appts that brought me to here....i feel like im being taken the piss out of because i look about 15 :/

hayleyc85

@hayleyc85

im taking my scary Auntie with me. They just dont listen to me! I've been pissed about for long enough and even the regional manager has been dealing with my case. Surely i shouldnt be getting fobbed off any more.

cameron

@cameron

Would it help to clarify your mind if you went on the MS Society website and got phone help from one of their advisors before your appointment? Sometimes it's easier to chat round an issue than explain it in writing. And remember that if your neuro team really is that poor you are within your rights under the NHS guidelines to be treated anywhere in England. That may seem like a long shot but keep it in mind. It's what I (and MANY on this site) were forced to do to get the treatment we were entitled to. xx

hayleyc85

@hayleyc85

I will try that. Thanks @cameron