I’ve been on here, making a nuisance of myself, for nearly a year and it’s also nearly a year since my “official” MS diagnosis.
I’d been misdiagnosed with lumbar spinal stenosis for about 10 years until finally someone had the presence of mind to MRI my head.
The trouble is, 2021 is year zero as far as the MS team are concerned and as yet, I’m on no DMT’s yet am still in decline. The approved meds for SP and PP MS are different (siponimod / ocrevus).
In 6 weeks, I have the important 1-year review meeting coming up. Here are my issues:
- I don’t think I was ever RRMS. Never had flare-ups followed by recovery.
- I had issues in 2003 & 2008 (and perhaps 2013) that could be explained as CIS but they don’t “fit” the accepted description. Could have been lower back issues unrelated to MS.
- Definitely follow the definition of progressive MS since mid-2016 (and possibly since 2013).
Without a history file prior to 2016, how do the MS Doctors determine if I’m PP or SP? I need to be asking the right questions!
- I’m due one more MRI prior to my review
- I’ve recently had a LP
Is there a test or reading that would tell them which variant I have, beyond doubt?