Forum

PPMS Disability

I was diagnosed at the age of 43 with PPMS straight off the bat. I’m now 47 & been doing everything possible to slow the progression. I’ve been putting things in place for the worst case cinerio. The key problem I’ve found, is other peoples ways, of thinking they are helping, when they actually make things far worse & speed up the progress. I compare it to a gathering of vultures, when they see a sick animal. It seems to be a common problem. I’ve been waiting for years for the so called helpers to get lost, but it just attracts more & more. They steel anything & use what information they have taken to make even more profits from your situation. For example, starting MS help groups & claiming funding. Steeling savings to buy themselves gifts. Ideas you were working on are now theirs & twisting the truth to make out their version of the facts. The lowest of all life forms. They did claim to be friends, so I ditched the brainless & I’m filtering out the fakes. All in all, my introduction to PPMS has been a nightmare. I thought I was dealing with enough. I was wrong. Being diagnosed is the excuse some needed & a way for them to fake their apparent illnesses. If I’m struggling to even move, they have a headache or a breathing problem. So I just have to plow through problems. It does get too much sometimes. Suicide & dissapearing off the radar is always on my mind. There’s some horrible sellfish people out there. Targetting the sick. Self promoting, egotistical freaks of nature. Using problems to raise awareness to their fake nature. Claiming it’s help. When it’s always about raising funds for their bull crap. There are some good folks though. Where, I do not know.

my first problem was floaters in my eyes followed by walking difficulty my neuro knew it was progressive but he wouldn’t say so until i had provoked potential test followed by a lumbar puncture watch out for uti too thats what put me in a wheelchair that and a useless gp that told me for a year i was fine i soon got rid of him lol

I’ve been refused esa and pip although I’ve been diagnosed with ppms (june/July 2017) and forced on to jsa, if my condition becomes worse through having to seek work, do I have a case for compensation on the grounds of medical neglect, I have medical notes from my hospital and my neurologist stating my condition

Hi, you might want to start a new thread as this is an old thread about different issues so people might not see it. As for PIP/ESA - these benefits are based on how MS effects you, it’s not automatic for any type of illness Good luck x

ps. if you think you may have a case for compensation, MS cannot be caused by medical neglect so I suspect it’s an ambulance chaser who may have even suggested that was an option for you!

Is depression a side effect of PPMS. I am still mobile though if I am doing a lot of shopping I have got a mobility scooter . I also use a stick when walking short distances. I work full time. I find myself getting annoyed with my walking more and more and that then makes me miserable. I don’t moan about having PPMS and try to be cheerful but some days I really could just sit and cry. Is this normal guys ??

Hi Little Davies

You don’t mention how long you’ve been diagnosed with ms. It’s quite normal to go through the grieving process when you’ve been given a diagnosis which you’re going to have for the rest of your life and the knowledge that it’s going to get progressively worse. This will affect everyone differently and for differing lengths of time.

On top of that, ms affects your brain and this too can cause depression. If you’re struggling it’s worth speaking to your nurse or GP. Counseling may be an option, but anti depressants can be very helpful. I’ve been on them for years and find they help me to cope. There used to be a terrible stigma around taking them but this has improved over the last few years.

My mum gave me a hard time about taking them but when my dad was diagnosed as terminally ill she started taking them and her entire attitude has changed. I never thought I’d see the day, but my mum says they’ve saved her life.

Everyone’s different but there is help out there, you don’t have to suffer in silence, and yes, it’s common.

Take care

Cath

I was diagnosed in 2010 so it’s been a fairly long process to now. I don’t take any sort of medication. I moved from England to wales five years ago and haven’t seen a consultant since 2010. I have access to an MS nurse but only if I feel the need. It’s just frustrating when you feel changes like back problems etc but am not sure if it’s MS related or just old age.