Hello everyone
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?
A year of being fobbed off. I was determined to accelerate the process yet they’ve “won” in one sense. The One year review has come around and they’ve managed to achieve f-all. No definitive diagnosis and no meds. Reading the experiences of others on here and elsewhere, their pleas and excuses about covid are lies - they’ve been playing this game for decades, well before covid…
So, is there a definitive test for SP v PP, which would work irrespective of medical history (or lack of)?
I’ve not come across a definitive test. It seems to me that it’s a putting together of a picture over time. I really understand your frustration though, it was 3 years to my diagnosis and that was 5 years ago… no treatment for me yet. I think I’m definitely a ‘smoulderer’! I’m planning to try and have a conversation about The idea of not just focusing on DMARDs, and that’s the only suggestion I can think of . Sorry not to be more help
I have PPMS (25 yrs). I never get “relapses” or periods of specific disability. If I get a new symptom (I have over 20 now) it doesn’t go away. They vary in intensity from day to day but they never go away (Pain, numbness, neuralgia, fatigue, muscle spasticity, tremor, muscle weakness). It’s been a long slow deterioration and most days are exhausting. On the plus side, I don’t wake up suddenly blind, unable to walk or experience some random (temporary and often severe) symptom. I just wake up in pain and very tired. That’s just my experience of PPMS.
