16 tandems and 3 solos...

...ride from Glastonbury to Castle Cary for lunch on a beautiful autumnal Sunday.
30 mile return trip.

With my good pal and fellow MSer Kate. No, we didn’t cycle on the same tandem, that would be a disaster! Tandems are great for getting exercise with MS, our husbands balance for us! And yes, we do pedal on the back 😉

Investigations and the T-shirt to prove it

We went to London and I...

1. Had an MRI

Five years (almost to the day) since my last one and nearly 12 years since my first, time to find out the state of play in my brain. MS is likely to be still 'active' i.e. lymphocytes still breaking through into my brain to wreak havoc periodically as I'm worsening quite fast i.e. probably still having relapses. As my previous neuro pointed out to me two years ago 'I don't need an MRI to tell me that'. I'm sure he was right too. Is that still the case today? One thing for sure, the MRI scanner never lies. This time it had a chance to catch errant lymphocytes in action, thanks to a gadolinium contrast medium, something like this:

for the benefit of any chemists 

Maybe I'll have some Gd lurking in my brain forever more, to be honest, that's the least of my worries. In case there was nothing to catch at that moment in time, the scan also picks up the usual evidence of any new damage since 2012.

2. Had a lumbar puncture (LP)

https://www.mstrust.org.uk/a-z/lumbar-puncture

First time I've had the pleasure. Actually, it wasn't anything like as painful as I'd heard. Which was just as well, as the whole procedure took rather a long time. About an hour and a half. For no reason in particular I understand, the Dr could not get his needle to tap into my CSF. As a result my lumbar spine now has a pattern of join the dots along it. Everyone in the room was super-nice and I always enjoy having a medical student present as I get to benefit from the explanation and teaching for free! So I learned that an 'atraumatic' needle (by inference suggesting a 'traumatic' needle is the alternative?) is used. Atraumatic needles are much less likely to result in headache and lo and behold, no headache. Dr also kept topping me up with local anaesthetic as the procedure was taking so long, so it wasn't until I was on the train home later that I started to feel a bit sorry for myself. 

What will this show? At Barts everyone has an LP to establish two things at treatment baseline: 

a) Oligoclonal bands (OCBs)

This are formed in the CSF due to the presence of antibodies. Often done to diagnose MS, especially if MRI inconclusive. Hence this LP was my first (my MRI in 2006 showed multiple lesions 'disseminated in space' and I'd had relapses 'disseminated in time' all sufficient to diagnose MS).

b) Neurofilament levels (nfls)

Neurofilaments are cytoskeleton proteins (scaffolding) that support the axons in the spinal cord. I've never considered this idea (before learning about it on the Barts blog), but without neurofilaments the axons would be suspended in mid air. In MS, axons die and neurofilaments break off into the CSF. So, nfls are a biomarker of disease progression. 

3. Met some famous people and got the T-shirt to prove it!

Mouse Doctor,  Mouse Doctor2 and Dr K. Fantastic to meet these wonderful people for real at last. I am indebted to them all for years of dedication to MS research. Such lovely people too.

Dr K is leading on the proposed CHARIOT-MS trial studying cladribine for people with advanced MS. That's people like me, who don't qualify for any treatment according to the powers that be NHS England. If CHARIOT goes ahead the trial will be available at centres across the UK. 

https://www.youtube.com/watch?v=4pKmpCP4hCY