grandma 18/02/18
Last reply 5 months ago
Just started Tecfidera (7 weeks ago)

Am now taking Tecfidera after 23 years on Beta Interferon. Relapsing Remitting has finally become secondary progressive, but they did tell me when I was first diagnosed that R.R would become 2nd in 10-15 years, and it has taken 23, so not complaining, Beta Inferon was very good as far as I was concerned, but totally accept that things have moved on. So has the other half after 43 years of marriage, he could cope with 1 disease, but I dared to get breast cancer as well and he couldn’t cope with 2 diseases,so along with having all my DLA taken away, along with my Mobility car after 19 years, 2017/18 has been a great experience. Have made enquiries about going to Switzerland, but apparently you need £10,000 which needless to say I haven’t got so it looks like I will be dying quietly in the corner, so mr government has won, anyone else in the same situation?

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stumbler
5 months ago

@grandma, you have had a lot going on, but remember the saying, “what doesn’t kill us, makes us stronger”! And, I assume from your chosen username that you are a Grandmother, so do consider those youngsters all growing up and needing their Nanna.

Did you have any assistance in trying to prevent the removal of your DLA?

And, I’m confused by the Tecfidera. I know that the transition to Secondary Progressive MS (SPMS) is pretty subjective, but Tecfidera, along with all of the Disease Modifying Therapies (DMTs), are for Relapsing Remitting MS (RRMS)……..

Anyway, welcome to our Forum of friendly positive people. Hopefully, we can raise your spirits.


grandma
5 months ago

Thanks Stumbler, I can beat you by ten years but I’m also an overgrown teenager who happens to have the body of an 80 yr old as well. Yes I did get help from CAB, MS nurse put me onto someone from the MS society who supposedly does nothing but help with PIP applications, she did nothing for me, when I rang PIP three and a half weeks later to discover nothing had been done I turned to CAB 3 days short of the month which is allowed for replying, they were great, even physically writing for me which I can no longer do for myself. But that wasn’t enough, so despite 24 years of MS, Breast Cancer, not being able to walk, being unable to dress, the list goes on I am not considered sufficiently disabled to get any help at all. Council have been great, in fact I had a throughlift installed this week, so tonight should be my last on the sofa! I have disabled bathroom but it’s upstairs, so showering is back on the menu. Great days, .I can’t afford to pay the electricity bill but at least I can be clean and skint!


stumbler
5 months ago

@grandma , you seem to be one of the genuine cases that has been the victim of a private company’s need to show results!

Personally, I would be shouting at my MP, asking them how they could let this happen in their constituency. I’d also bring the local press, papers and TV, into the situation too.

You might be interested in a post I made a couple of years ago, when I sought answers from my local MP :-

https://shift.ms/forums/topic/dlapip-reassessment-for-uk-readers

I’ve yet to be reassessed myself ………


petlamb
5 months ago

@grandma

Please do as @stumbler is suggesting – make some noise about this – it’s appalling treatment. Plus press, local papers, regional TV news stations, etc. Also, try Tanni Grey Thompson (disabled MP) – [email protected].

I really feel for you and the situation you find yourself in because of the so-called government ‘austerity’ measures. IT STINKS. Please don’t give up hope – keep fighting. I know that’s difficult enough with MS never mind your other cancer diagnosis and the huge amount you have going on at the moment. Get all the help you can. Local MS Society? Can they get involved?

Suze xx

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