I am currently on the Standard payment for living (PIP) unsure of what its actually stated as but i found the entire process awful and because i have RRMS I can differ form day to day one day i may be ok to walk the distance from my car to the super market and go shopping but other days, weeks, months i don’t even have the energy to stand up let alone get dressed and leave the house and my poor hubby (of 1 year) is the one who has to pick up the pieces, thanks goodness for him! For me Fatigue and brain fog seem to be my hardest symptoms to control and understand myself let alone help someone else to understand and they don’t seem to get taken seriously as they are not symptoms you can see they are invisible but very much present like a lot of MS symptoms. my latest relapse has really taken its toll on me cognitively so sorry if this doesn’t make much sense - i know what i want to say but i cant quite get it down in writing!!
Hi MRS-RHA
In your position, it might be a good idea to try to get a welfare benefits advisor to run through your award and what you put on the form (assuming you kept a copy), and compare that with your actual symptoms. It might be worth either requesting a reconsideration of the award if you are in time (one calendar month from the date of the decision) or putting in a claim for a change of circumstances in order that you get your claim reassessed. If you can’t find a welfare advisor to help, and/or if you are happy to do it alone, have a look at: http://www.benefitsandwork.co.uk/ website. In order to get the complete guides to benefits, you need to join and it costs about £20. But it’s worth the money as the guides are correct, up to date and make a complex system more understandable.
The other thing you might want to look into is getting a drug to help with the fatigue. The best one is Modafinil, but many neurologists and most GPs won’t prescribe it any more unfortunately, so the other drug that you could try is Amantadine.
You could also ask for a referral to a neuro-psychologist for a cognitive assessment. They may be able to help with cognition problems and brain fog. Maybe try the fatigue drug first and see if it helps, then at your next neurologist appointment, if you still suffer with brain fog and cognitive issues, then ask for a referral.
Good luck
Sue
Wow thanks so much for all of this advice im going to have a look into it all! my only reservation with the meds for the fatigue is that me and hubby are currently TTC (no look for 11 months) as i want to have a family while i am still able to enjoy having young children and be the best mum i can as well as hopefully having a full recovery from the apparent relapse you tend to have after birth which i have heard and seen can be quite rough so because of this my neurologist has kept me off all meds and even took me off pain meds for the time being - its a huge struggle im just hoping it will be worth it in the end and after we have our first child i should be able to have meds to try and control everything, im getting so desperate!!
I wil definitely be asking for a referral to a neuro-psycologist for a cognitive assessment and have an appointment coming up where i will be able to do this so thank you especially for that as i had no idea this existed or even that i could ask for this!!
xx
My head hurts…
Urgh!
“But the government says the new process is fairer and people can appeal.”
Righhtt…of course they can appeal, so THAT makes it all ok, doesn’t it! The fact that a lot of those appeals with likely be thrown out…and even if they’re successful, the detriment to both mental and physical health during the process…
This is exactly the point Alun started the thread with 
The BBC report and his personal thanks to IDS for his caring approach. The bast*rd (IDS not Alun, I’m a big fan of Alun!)
Total ballocks isn’t it?
I guess the pond life politicians need to save a buck for their pensions or more missiles. Ever feel that we are the path of least resistance?
… Don’t get me started
M
We do seem to bear the brunt, there’s no denying that : / It’s back to us being seen as the biggest drain on society I suppose.
Hi I’ve just received my Pip letter and they’ve completely taken my mobility, I’m getting worse not better and it’s further complicated by osteo Arthritis, I walk with two crutches and have a wheelchair, i get pains that make me cry out and my legs give way, I also get cramps. I have severe anxiety and now I feel worthless.
Oh I am sorry. That’s so hard. I suggest you request a reconsideration of their decision. This must be done before you can appeal the decision and you have one calendar month from the date of their letter to do so.
I would also suggest that you try to get some assistance with this, have you tried your local Citizens Advice Bureau? Or is there another welfare rights service available to you, maybe through your council?
What ever you do, have a look at http://www.benefitsandwork.co.uk/ it costs about £20 per year to become a member but that gets you access to their brilliant guides. Or try http://www.benefitsandwork.co.uk/
Best of luck. I hope you manage to get their decision overturned and your benefit back.
Sue
Don’t give up Lor but. I know it’s hard to keep going but do its worth it. I used the benefits and work guide mentioned by Sue. Well worth it as the advice is so clear. I had my appeal tribunal last week and won. Send everything by recorded delivery- the DWP list my first claim. Good luck x
And don’t forget to take a copy of everything you send the DWP.
Sue
Thank you all, it has been a bad day all round with a death too. Thank you