Would it be usual to be examined at a neuro appointment? I have seen my current neuro 3 or 4 times and she has never once examined me. How can she assess whether I am deteriorating? I raised the issue of secondary progressive with her once (my symptoms are getting gradually worse with no relapses) and she just said she would use the most recent mri as a baseline.
My old neurologist never used to examine me. It’s weird some do everytime and others never. My rehab neuro examines me pretty much everytime I see him. A neurologist I used to see gave me a physical exam every time and also used to tell me where I was on the EDSS (disability scale), which was a bit pointless, and could make you feel crappy if you are rapidly sliding up the scale.
Carole is right about not rushing into SP, if you are on a DMD, then don’t be too quick to get relabelled. I’ve been labelled SP for about 2 years now and haven’t been on a DMD for all of that time (to be fair, my neuro only relabelled my MS because I seemed to have run out of DMDs that I could take) and I just had a clear cut relapse. With complete remission following steroids. So you could call it Relapsing Progressive, or Active Progressive, or just Advanced MS.
It sounds like you are SPMS, so it is worth getting a new MRI done. You will gain more NHS evidence which will spare you from having further ESA reviews.
My Neuro never checks me physically either - he just calls for another MRI to see if there is disease progression [which there was] and uses reports from the MS Nurse to judge how active I am at home.
I also have some help from the Community Rehab Team’s OT and physio, which is helpful and I see my GP for my tablets.
I’ve just had a scan of my bladder and kidneys, as I am getting lower back pain which feels like MS to me, but they
want to check this. So I feel I am being assessed in the community by my MS Nurse and GP. But I do ask for this help.
I think they also note whether or not you are having falls, or need to use a wheelchair or scooter or walkers etc.,.
As you decline - falls assessments are important - as 7% of folk with MS die due to a fall. Not mentioned often enough. So much for DMDs!
Anyway - making use of the community healthcare team has helped build a clear picture of my decline - and generated lots of NHS evidence/reports, which was useful to send with my PIP assessment form. They didn’t ask to see me, because I had been seen by many already.
Keep the NHS busy assessing you - in the current DWP climate: “Don’t look an NHS assessment in the mouth!”