Hi
Im a 60 yr old male and have been diagnosed with PPMS. A year ago I didn’t know there was anything wrong with me but in hindsight I had mild symptoms for a couple of years. In January this year I woke up one morning with numb and tingly hands and arms and other weird symptoms. Since then I’ve had two MRI’s and a lumbar puncture and my consultant has diagnosed me with PPMS. Apparently it’s a little unusual to be diagnosed with PPMS at my age. I’m going to be started on Ocreluzimab infusions.
Anyway I’m sure I’ll contribute more to these forums and get to know you guys.
Hello there! I remember asking my neurologist shortly after I was first diagnosed what type of ms I had, and he said to me we would probably know when we looked back in about 10 years time. The only thing with the progressive types of MS is that most drugs are not licensed for them. So if you’re getting relapses of any sort, no matter how trivial, make sure you get in touch with your MS team and tell them. Relapses mean that there’s many more options for disease modifying therapies.
Hi Rob
I’m a 62yo man and was diagnosed 4 years ago, so we’re on a similar timeline.
In reality I recognise in hindsight that my MS began 8 years ago and unexplained incidents which were probably MS 12-15 years ago. It can be really hard to diagnose at times. I wouldn’t say it’s unusual for a late diagnosis and PPMS characteristically onsets much much later than RRMS though there are exceptions both ways.
Good news that you’re being lined up with ocrelizumab promptly and I hope it works. I’m one of the ones for whom it did more harm than good. Sounds like you have a proactive MS Team.
Stay close - there are lots of resources you can tap into,
Graeme
Thanks for the reply. He compared the MRI I had in March with the one in September, and with the history of the symptoms and the lumbar puncture he said it is active. I guess that’s how he concluded it was PPMS. My symptoms have only got worse although its not an even trajectory. There was a significant worsening in January and no improvement at any point.
Hello @robj444
Crumbs if think back to my earliest symtom, it would probably be the constant feet pins and needles at primary school in the late 80s, I’m 43 and dx RRMS since the turn of the century.
Me personally I’ve not taken much notice of MRI results as dark lesions don’t show anyway and LP is just an indication of MS, I think RRMS and PPMS are different branches of same degenerative CNS disease, I feel my symptoms have just steadily worsened after every relapse/flare-up and over the years also.
Welcome to the forum,
JP
