I have been diagnosed with PPMS for 5 years. Symptoms have slowly increased (I reckon I’ve been quite lucky so far). I have weakness in arms and legs, spasms, shutting pains etc, but my legs just about work, they just need a bit of rest regularly . Recently I’ve have the sense that my MS is very active, and I’ve been waking up in the night with my left arm or leg completely numb. So far this has past by morning, but I am worried that at some point it will stay. Has anyone had this? Do you think it will probably develop? Thanks for any thoughts, and don’t hold back - be brutal!!
Hi
I have weakness in arms and legs, but I haven’t experienced complete numbness. I ain’t much help really.
Kel
Time for another MRI. Pretty much he only tool the MS Doctors have diagnostically is to look at your current head & spine and compare it with the last one, to determine the level of disease activity.
Since your diagnosis in '17, there is a single NICE-approved treatment for PPMS called ocrelizumab (or Ocrevus). It’s very expensive and so consultants aren’t exactly throwing it at us. However, you should be asking your consultant, in writing, about your “Treatment Plan” and your suitability for ocrelizumab. There are eligibility criteria based on time since diagnosis, level of disability, age and identifiable evidence of disease activity.
The problem for those of us with Progressive MS is that symptoms can be worsening yet it not show up on consecutive MRI’s. Until recently, those of us with Progressive MS have been confined by definitions of activity based on the more common form of RRMS. Those with NEIDA’s (no evident inflammatory disease activity) are challenging the very definition of MS, as championed by the eminent Professor Gavin Giovannoni at St Barts (Prof G) and conceptualised as “Smouldering MS”.
Up to you to decide which definition of PPMS fits you and to challenge your Consultant to come up with a treatment plan based on their findings. That’s a technical answer to a simple question but will force your consultant to get of the fence and do something!
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Thank you for taking the to say all that! I do appreciate it. I have had MRIs every year and each time the result is that there are no active lesions, despite the fact that I am getting worse symptomatically. I’m seeing my consultant next week so I’ll see what he says. Thanks again for your thoughts
I’ve found that the phrase “what is your proposed treatment plan for me” tends to shake MS Consultants into action. The implication being that they are not doing enough currently.
I’m in the same position. NEIDA yet worsening symptoms.
I found the paper on ‘smouldering ms’ —thank you it’s really interesting. It’ll take me a few goes to properly understand I think! Thanks again