Hi I’m Sean and I’ve just been diagnosed formally with active PPMS. I will start Ocrevus soon.
I’ve known this was a possibility for the last 3/5 years when things have been progressing slowly. I’m now Just getting my head around this diagnosis and what it means for my independence, working and family life.
At the moment I actually don’t feel too bad because I have a secure job and good friends and family. My disability is quite significant in that I can’t usually walk further than the local shop. I also suffer from UTTs that can lead to emergency admissions and life threatening infections - probably the greatest threat now that I’m about to start an immune suppressing treatment.
Anyway, I will be on here now so I wanted to introduce myself.
S
Hi Sean
Tough break. Like you I went for years being misdiagnosed until the dots got joined up and PPMS was determined.
Talk to your employer because the landscape will change as time goes on and it is merciless in its progress. Get yourself set up with things like a blue badge and PIP application, though before you apply, make sure you have plenty documentary evidence in the form of medical reports confirming not just what you’ve got but more particularly, how it affects you in daily life.
Graeme
Hi Sean, I was diagnosed in July last year and my consultant is unsure if I have relapse or progressive ms so I’m being treated for both. I have right side weakness and foot drop. I have just had my first dose of Ocrevus and tolerated well. Hope your keeping well, take care Angie