Annual Neuro Check-up Complete!
I had my annual check up with my consultant 2 hours ago at RUH Bath. Here is a brain dump of our discussion, while it's fresh in my mind, in case it helps anyone else with RRMS/SPMS who takes a T Cell based DMD:
- Lymp count was 1.3 and right where they want it.
- The very slow annual increase in symptom severity due to "smoldering MS", what he calls effects of Legacy MS, is normal and expected. My diag remains RRMS.
- He advised SPMS was a term introduced several decades ago to aid research and neurologists are slowly phasing out it's use. In his opinion everyone with RRMS transitions into a "progressive non relapsing state" but the noticeability and time frame varies widely between patients. He said if we must use the term SPMS it's possible I'm transitioning now but too early to diagnose.
- Since 2017 brain scans have remained unchanged (no activity). neck scans have not been done as the brain is the important bit. In May 25 will have both scanned as I pressed for it so we are 100% sure DMD is working.
- He acknowledged mood can be a direct effect of MS in addition to indirect. Apparently there are no pills in Particular that lend themselves towards the direct effects ie. You take what works best.
- He recommends I should stick with Tecfidera (DMF), even though there have been other "highly efficient" drugs placed on the market in the 6 years I've been taking it.
- In respect of remaining relapse free, broadly speaking there is no material benefit in me swapping to Kesimpta.
- The nurse present re-confirmed that Tecfidera works better after having been on it for over 2 years after which the relapse reduction stats you see on the MS Society website don't apply.
- when I mentioned Kesimpta and Ocrevus did better at reducing relapses than Tec is the 2 year trials he said don't read to much into the stats as they aren't as useful as they look.
- For my stiff ankle as Baclofen hasn't worked he said ref alternatives Tizanidine and Dantrium, I should not get my hopes up as these work with moderate to severe spasticity but don't tend to with mild spasticity thus I would be over medicated.
Hope this helps anyone.