** See update at bottom of the thread. 2 years on…
I was diagnosed with MS in Dec’20 with confirmation coming Feb-Apr. 58yo man. Previously very sporty. Main manifestation is numbness / loss of motor control in left leg plus lower back pain.
Having been mis-diagnosed with spinal stenosis for 9 years, it’s pretty clear by the manner of my decline particularly since mid’16 that I have Progressive MS: no RR characteristics and a steady decline. However, I had perhaps 5 individual episodes prior to that which have since been written off as chronic lower back pain and/or sciatica.
I say “episodes” because they were isolated, single events, years apart but they did cause some confusion for my Consultant & Nurses at first whether I was SP- or PP- MS.
If PMS and the earlier episodes were unconnected, then there’s one possible treatment. If they were connected and it’s SPMS, then it’s a different treatment altogether.
Their treatment plan was “Wait and See”. Bugger that! In 5 years I’ve gone from doing 3-4 Bootcamps a week to having a blue badge, walking stick and EDSS 6.0. I’ve switched to an auto car, closed my company and stopped work. I can’t afford to wait!
So my question is: How do I provoke the so-called specialists into action? Is there a test that differentiates SPMS / PPMS? Anyone had a similar experience?