Happy New Year 2018!

Driving on around Lake Arenal to the west we reached our next stop Monteverde. Couldn't find an accessible trail through any of the reserves but did discover the Original Canopy Tour:

Being high up in the canopy with the birds and views to the Pacific ocean was exhilarating beyond measure.

This was Costa Rica's first zip wire tour of the rainforest canopy established back in 1994. Unlike other tours this one goes tree to tree through the forest so only involves one 15 minute hike to the first tree platform. Me, hike uphill for 15 minutes?!

So I lied and signed the form to say I was physically capable of doing it. Somehow, with John and Ali each side supporting my arms and taking most of my weight and all I had to do was walk my feet over the ground (advantages of me being 5ft tiny, whilst John and Ali are 6ft strong) I got there. Our wonderful guide Pedro decided we should be a private tour (just the three of us) and with no time pressure encouraged us to take frequent breaks. He then positioned us so that Ali always went first:

Ali took to it like a duck to water

and John last:

So cool!

In this way there were always two people to help me on the platform. To be honest I found the zips tough to say the least, my right arm struggling to pull down on the wire to brake:

Not exactly a controlled landing!

This bit was optional, so sat it out on the platform and waited for them all to climb back up via rope ladder 

Keiver always went first and proved a dab hand at filming. 'He's a pro' Pedro assured me. 

He's never dropped a phone, yet....

Keiver, Pedro, me and Ali

It was New Year's Eve.

Fabulous to finish 2017 on top of the world!

Costa Rica pura vida!

We've taken advantage of the Christmas holidays and all meet up with Louise in Costa Rica for two weeks. Fantastic to see the wonderful country we've heard so much about at last. So much wildlife! Spent the first few days near Arenal Volcano (not that the cloud ever cleared to give much of a view). Arenal Observatory Lodge includes some reasonably accessible trails for an all-terrain wheelchair like Mac and someone like myself able to walk short distances (currently up to about 100m or 5 minutes total standing time). As I've said so often before, there is a huge difference between being a wheelchair user and being wheelchair bound.

This was as far as I got while the rest of them legged it down steep and slippy steps to swim in the waterfall far below. I'd have been there in a former life and did consider trying to clamber down....

So if I look wet in the photos I hadn't been swimming it's because it rains (heavily) frequently in between spells of beautiful sunshine. Guess that's why it's called a rainforest.

Arenal Volcano is behind us! 

Christmas tandems

Three Kings, two reindeer and 

a camel.

Not forgetting the pantomime favourites....

Dick Whittington and his Cat. This one's better without the cycling gear.

This was our Tandem Club Taunton group Christmas lunch on Sunday 10th December. There should have been about twenty tandems but the weather was so dreadful just three did a very short ride before all enjoyed a lovely lunch together.  Rather a late post, it's been crazily busy. I'm not complaining, we're off on the holiday of a lifetime shortly meeting Louise in Costa Rica. This will be the first-time we've ever been away for two weeks or done winter sun. Then there have been cards to write, presents to wrap, family and friends to visit....

It's been a pretty good year all in all, still no MS treatment but next neurologist appointment lined up for January.

Happy Christmas to all 🎄😊

This could have been me #tecfidera

Here's a snapshot from a recently published clinical commentary about dimethylfumarate (dmf or brandname Tecfidera) and prolonged lymphopaenia (low total lymphocyte count) that I pinched from a neurologist's Twitter feed this morning. Fact: neurologists tweet, friends and family do Facebook; meanwhile clubs, charities and anyone wanting to sell you something do both!

Anyway, what the report points out is that dmf causes marked lymphopaenia that persists after drug discontinued. Like me, this patient had switched to dmf after beta interferon and, also like me, only took dmf for four months. Clearly, dmf lymphopaenia has no bearing on how effective the drug is as this patient had a severe relapse despite her lymphopaenia. I know from my own experience that two years post dmf short course total lymphocytes remain low and from the flow cytometry  (measuring lymphocyte subsets) the cell group particularly low are the CD8 T cells. Dmf must deplete memory B cells to a moderate extent whist being taken for it to be moderately effective. It would seem to me that at the expense of long term lymphopaenia in particular low CD8 count this drug is not worth the risk.

Sorry folks, next post will have some photos..... here's a clue #tandem #christmas #fancydress

To B, or not to B: that is the question:

Here's a pretty picture of  cells of our immune system:

First time I had an introduction to how this worked was at Cardiff in 1988. Our immune systems are truly amazing (and just a little more complex than the picture above). But I had no idea that the monoclonal antibody breakthrough at that time was being led by rituximab, (subsequently approved for use in 1997) and even less idea of the future relevance to myself. Here is the lovely Prof Steven Hauser from the US explaining the story:

https://www.youtube.com/watch?v=g83lKeSWJtc

Please bear with it (if you can spare a few minutes), he speaks clearly and and even John followed the first bit. You might want to give up after that (John fell asleep) but for me it was one of the best explanations of MS I've ever seen and how far we have come with treatments. To sum it up, MS is a B cell led disease.

Yes, T cells follow after them, join the party and cause great annoyance to the resident microglia (monocytes that settle in the brain) but the B cells started it. And we know that the memory B cell is to blame:

http://www.ebiomedicine.com/article/S2352-3964(17)30045-2/pdf

Fast forward 30 years and rituximab is at long last being used (off-label) to treat MS. Unfortunately it's too expensive for the NHS to permit off-label use. Why off-label? It was never commercially viable for Genentech (now Roche) to bother with MS clinical trials as remaining patent life expired in 2013 (Europe) and 2016 (US). So it's brother ocrelizumab ('Ocrevus') is now licensed in the US but we're still waiting in Europe. And then NICE will have to approve. I only stand any hope of receiving it if my recent MRI shows evidence of activity, allowing my kind neuro to add the magic word 'active' in front of my secondary progressive diagnosis.

But why would I want ocrelizumab when I can have off-label cladribine injections?

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