Greetings fellow sufferers.
I was diagnosed with PPMS nearly 3 years ago from out the blue.
After surrendering my driving licence to the DVLA & loss of my job. I was then assessed by ATOS for PiP & recieved the full award on both parts & sent a letter saying my next assessment would be 2017. A few months ago I was sent a 40 page form from the DWP & filled it in before being assessed. Now I’m on to a basic PiP award of £21.80 a week. Not sure why, as my situation is going from bad to worse.
After a visit to my local CAB to appeal to decision. I’m told there’s not much chance of any progress, yet my MS is progressing at a much higher rate. Due to my blood boiling at how confusing this whole process has been forced on someone recently diagnosed.
It’s not a good situation at all. How can someone with a drastic drop in mobility cope on such poor decisions? I’ve started the appeal process & been advised to stay positive. How? That is the question.
From diagnosis to loss of the will to live in such a short time frame is insane.
I would like my driving licence returned & my job back ASAP before I’m advised to live on potatoes grown in a window box.
Yey, such a great life. Time to put the kettle on & watch countdown. A can’t get very far. Is this a sick joke?
Warm regards to anyone in this boat.
Apparently my next assessment is 2022. A progressive terminal problem gets better by the day.
Yo yo yo, go with the flow. We’ll take 11G from your account & make it snow.
I’m just wondering when all this chaos will stop. Thinking outside the box with an open door. Something different didn’t turn out to mean this surely. No cure either or is that the Band we promote. I’ll never get told the truth & fail to trust even my shadow at this rate.
At least I can have tea & biscuits.
That’s a real stinker. I agree with appealing. It’s certainly not a waste of time. As far as the driving licence goes, I renew mine every three years. Can you approach DVLA for this sort of arrangement? You may have to pay for a re-assessment by your GP. I’m sure others on here can also give good advice.
I’ve never really had proper answers from the neurologist. I suspect he doesn’t know any.
It’s really hard adapting and accepting your situation. I went from a hill-walking mile-swimming cycling pianist and cellist to my wheelchair. It was over the course of twenty five years so I did get a lot of practice with the art of getting worse. The forums have been invaluable.
Best wishes, Steve.
I had 2 weeks to adjust unfortunately. Not a clear answer from anyone I’ve met so far. Even after a year of denying the PPMS label. I now know, it’s others who don’t accept it. Too caught up in their own verdict & limited knowledge. I get more sense talking to the mirror. Wo betide I do anything that isn’t related to MS. It brings out the pokers. I’ve had a crash coarse in life & had the vultures steel 11k from my bank. It’s been a great intro to lovely MS. At least it’s not smelly nappies I hear. Okay yar.
Crack on with the hill walking, cycling & pianist ways I say Steve. MS seems to bring the worst out in people.
I’m lucky apparently. Use it or lose it. Fat chance of that I say.
Losing the PiP is because I don’t quit. Changing your life whilst everything sits on your back.
I’ve been on this forum for 3 years. I know the drill.
Crack on Steve. Be happy :):)
I went from being offered nothing, to applying for a mandatory reconsideration and moving to basic rates, then applied for a tribunal and the DWP changed both to enhanced and it didn’t go to court. I don’t understand how the CAB can say that unless they have reviewed everything.
I asked for a copy of the ATOS report so I was able to write my reasons for wanting a mandatory reconsideration - it was worthwhile for me as I was able to detail inaccuracies etc. We looked at the definitions of the measures on the DWP website - explaining how I’d ‘coped’ up until my assessment wasn’t what they wanted to know, I said this to the assessor at the 2nd appointment… he got my measure when he asked me to squat, which I did BUT he caught me as I tumbled down! Proof that I will always try to cope I guess, so I’ll always try to hang on to that.
It took a lot of time for me to write but it felt like it was worth it for me - I went from running 2 businesses to full ill health retirement within just a couple of years.
There’s been no changes aftr the 2nd review.
Keep trying if you need it
Thanks for the feedback Red Sonia. I didn’t expect anything like this to happen with life. We all had our plans & when things go wrong, we learn things get very twisted. It’s a free for all.
I should of confronted my GP about why I was told this & that for years. Having a disability & a crowd of idiots pushing their weed cures says it all. MS is no fun. The fact I can hardly walk is a joke to some demented soul.
My driving licence returned & my job back please. Life was so much easier then. No jealousy of anything from others. I just got on with the problems. Now the problems cause more problems to cover their slug trails.
The business plan I was going to do, got stolen & now my life is dictated by she says, he say’s, they could, we could.
In the meantime my health deteriorates rapidly & nothing is happening. People make up their version.
Take care out there. It’s messed up.
I completely understand how you feel Terry. I’m currently taking part in my 2nd clinical trial - I can’t say I’m happy to do it, more a case of just doing SOMETHING! As my little sister said, you might be helping someone way down the line in ten years, if I can’t help me then yes, help the MS cause that’s gonna mess up so many lives, left to it’s own devices.
And thanks for the name ‘Red’ was my old nickname
You’ve had just about the worst piece of news you could possibly get.
It’s not the life you planned for. It’s not the life you wanted. But it’s the only life you’ve got. What are you going to do with it?
Stop looking back; you’re not going that way.
This is so wrong i have seen people with minor problems get enhaned, i get enhanced as should you and a 10 year award, anyway appeal and ring dwp up and ask for the assessors report they will sent it you so you can mark down everything the assessor said is wrong mandatory decision before appeal, good luck any letters from gp or neuro will help too.
I was on enhanced for both parts & when much worse. I was reduced to basic mobility only.
There’s lot’s of wrong info from somewhere. My GP says Vertigo & the Neurologist after a few years of testing confirms Primary Progressive MS. The dust will settle eventually. I just want my licence returned so I can go back to work. The system is either tampered with or severely wrong. All I know is, I’m getting far worse, whatever the paid people say. I don’t want MS at all. Yet some people say, they have MS & get full awards plus get to keep their licence & job. It’s all a bit Pete Tong.
Thanks for the advice Marie. I’m doing everything I can. Disability Solutions & Disability Law interviews next week. If I get much more paperwork, it will fry what’s left of my brain. I will test no more medications when told there is no cure. Despite some people advising me, that if I’m not on medication, there must be nothing wrong with me. I took Baclofen for nearly a year & it turned me into a cabbage. I’m still recovering from that & improving my diet. Exercising & keeping busy. Ploughing through all the different problems. Like a Bull in a china shop. No pain, no gain. Broken toes, constant cramps & falling. I even forget how to breath in my sleep & wake suffocating. So much fun. NOT!
If there is nothing wrong with me. Why all the agro? I’m told it’s because of things unrelated to Multiple Sclerosis. If that’s the case. I am not interested.
Take care Marie & keep up the good fight.
I know how you feel i don’t want ms either i am only 36 and PPMS i got worse after a uti now i got lymphodema and pressure sores that keep returning and fatique driving me insane amantadine doesn;t work so stopped that get that report you need it see where they lied if your on facebook look up 4UP they are great and helpful.
Thanks for the advice Marie. I just wish taking this health problem was as easy to take away. By the time this current system has finished messing about with my life, it will have robbed me of my sanity along with everything else.