Last reply 3 months ago
MS Warriors vs. NICE update

Hello all. You may remember that I got invited to Westminster to meet an MP and discuss the refusal to approve Ocrevus for PPMS, which my sister has. My hospital has said that I would be eligible, as I’m RRMS. Well, the MS Society asked me and my sister if we would be happy to release our story for them to use in the campaign as an example of the injustice of the decision. What this has meant, is that I’ve faced the decision of whether I/we should disclose our diagnoses, given that not that many people around us know (it’s been 2 years now). We decided it was for the greater good and have spent the last week telling all and sundry, including work colleagues, cousins, old school friends. So it’s been difficult and emotional but wow, what an unblocking! I feel quite liberated, and hadn’t realise how held back I felt. It’s just that inevitably, the news makes friends and loved ones really sad, and I hate that. But hey, I didn’t ask to host this monster. I feel like I have turned a corner and feel ready to fight the onward battle. I’ll keep you posted if anything comes of all this 🙂

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3 months ago

Well done you @vixen. It’s a good feeling when your diagnosis is finally ‘out there’.
I kept my diagnosis to a very close circle for the first five years, then decided to do a skydive for the MS Trust, so in the interests of raising sponsorship told the proverbial ‘world & his wife’.
You’re so right it is liberating. Hope you’re disclosure brings benefit for you and your sister x

3 months ago

Sorry , it’s late , bad grammar !

3 months ago

Thanks for sharing, @vixen and congratulations on your rebirth. 😉

3 months ago

well done vixen, please do keep us posted, you may remember last year i was on local tv news about the decision and any further info might mean we could get more publicity.

yours hank

3 months ago

Thanks @hank, I do remember your brush with the media! I am also aware that there are ongoing talks behind the scenes, so all is not lost.

3 months ago

You go @vixen . Once people are aware of the condition, their attitude towards you changes for the better.

Recently got word back from my MSP and Scottish Health Secretary stating that it will be looked at again for PPMS and in the meantime I could go down the route of an Individual Care Plan, or its modern day replacement, to see about getting O.

O may work or it may not but it would be nice to be able to try it.

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