Forum

Secondary Progressive MS & PIP

Hi everyone

I was diagnosed with Secondary Progressive MS in April, following 6 years of trying to get a diagnosis.

There has been a big shift in the last year with my mobility. I have to use a stick now all the time, not just when I am fatigued (which seems a daily occurrence now).

The consultants say I probably had RRMS, following optic neuritis in 2011 and previously a dead arm in 2007. My question is, will I get relapses with good and bad days, or will I just gradually get worse as time goes on and feel pretty much the same on a daily basis?

I have tried to get a personal independence payment (old DLA), but the DWP has said that I have not been awarded this as I have more good days than bad!!! It doesn’t seem like that to me. Everyday is a struggle and I really have to make an effort to go anywhere or do anything.

Can you let me know your experiences.

Thanks

Ness46

Hello,I have PP ms,which has got worse over several years,I would advise getting as much support for your application,so a letter from your MS nurse,physio,or an OT would help.Its all about explaining how your condition effects you on each of the various headings. I would repost into the daily living section as more people will read and prob reply. My PP ms is really the same every day and has slowly got worse,so I can’t stand up and need the help to transfer from bed to wheelchair.I would definitely reapply. Good luck with your application.

Thank you for your reply. I am working through the mandatory reconsideration letter at the mo. I’ve been on it all day and thought I would have a well earned break.

I, like you, have noticed that I don’t seem to fluctuate any more (I had RRMS since 2007, although never really confirmed and now have progressed to Secondary). I seem to have the same symptoms daily, but just progressively worse i.e. my legs hurt everyday now and struggle walking and I don’t seem to have good days and bad so much. I have really gone down hill this year and all my friends and family notice it.

All the very best

Ness

Hi ness see if you can get your councils welfare rights officer on your side they will help with your tribunal and all things financial they were a great help to me there are benifits there I didn’t know existed .

Any update on your MR?