Hi
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.
hi ruth
why the rush to get a diagnosis of secondary progressive?
better to stay under the label of rrms and get onto a DMD.
using the most recent MRI as a baseline sounds sensible to me.
it sounds to me that you need distracting from ms.
see if anyone fancies going to see a film/get a coffee/go out for lunch.
the worries will still be there but they don’t have to take over your life.
carole x
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.
MS is just an awkward bugger of a disease.
Sue
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!”