@loulou

Last reply

loulou

PPMS

Hello all I apparently have PPMS I often feel alone reading posts and chat as most people talk about RRMS, feel quite alone sometimes, say hello if you have PPMS so we can talk about OUR MS and compare notes!

Cathy74

@Cathy74

Hey lou-lou, I have RRMS, but thought I'd mention that there's a lovely lady that goes to the same gym as me, she was was diagnosed with PPMS about 10 years ago. She uses a walking stick, but she's doing really well, and doesn't let it stop her doing what she wants. She was saying to me last week, that a positive mental attitude is what gets her through. Hope you're doing ok. Cathy xx

Rach4687

@Rach4687

Hey 🤗 I have ppms . Got diagnosed in January there . How r u ? Post from 2011 so fingers crossed you get this . Xx

PeterW

@PeterW

Hi I have PPMS diagnosed in 2017. I know what you mean about feeling alone - there are not that many of us and no treatments to speak of. My mobility has deteriorated over the last 12 months but I do not meet the criteria for Ocrevus here in the UK. With the pandemic I am not sure I would want it at the moment. Not sure I feel as cheerful as many or feel I need to be as I also suffer quite a bit of pain in my hip the result of my gait being out of line. PPMS is supposed to be a priority for research and I really wish they would come up with something.

watsoncraig

@watsoncraig

Hi 👋. Speak to yourNeuro about Ocrevus, the only DMT approeved for PPMS, that’s what I am on. It is an exclusive club (0.0002% of the U.K. population) you have joined.There is a good Facebook group called PPMS that is solely for PPMSrs

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DominicS

@DominicS

MS is MS. We are all at just at different points along the curve. The concept of the different types was pushed by the drug companies to help segment the market prior to the launch of Beta-interferon (Rebif). Essentially, you have MS or you don't. There is little to be gained for any of us these days to reinforce the manufactured barriers. We all need to stick together.

2

sugarplump

@sugarplump

Hi, I too have PPMS, diagnosed november 2019 but probably had it 8-10 years before that. I dont meet the criteria for ocrevus...no new lesions..so no treatment. I use a walking stick but have just bought a walker/rollator so I can sit down more.

Terrier58

@Terrier58

I also have Ppms diagnosed in 2020 after many years of symptoms such as. Foot drop, heat intolerance, spasticity. Here in West Norfolk care is dreadful; my MS Nurse is a nurse for diabetes, MND, Parkinson’s, Epilepsy, etc and hopes not to hear from me whilst she’s “snowed under”. I got my diagnosis from a copy letter my local Neuro sent to my GP. When I questioned this he said “there’s nothing the NHS could do & to go home”. And we wonder why people with MS suffer from depression! I’ve since changed Neuro. I don’t match criteria for Ocrevus and take Tizanidine at night and Baclofen daytime to help with spasticity. Use a rollator and/or mobility scooter. A chronic diseases isolating.