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

Nous sommes allés à La Rochelle avec G-PCAT...

...which unfortunately meant it wasn't possible to bring Charlotte and we had to hire this heap of uncomfortable junk:

A miracle we made it over le Pont de Ré and back at all. Well worth the effort, Ile-de-Ré is beautiful. Next year we travel Easyjet and check Charlotte in too! 

It was an exhausting holiday, climbing in and out of the aircraft is becoming a challenge. The Easyjet option is looking extremely attractive. À bientôt!

Annonie Mouse goes camping

Ok, so the large family tent was all there ready for us fully equipped including proper beds, duvets and pillows. That's not camping laughed daughter Louise  (probably having spent the weekend wild camping somewhere next to a remote Scottish loch). In our defence, note the absence of car next to the tent. Taking a car to Guernsey is completely unnecessary, nowhere is far and bikes (and tandems) are free on the ferry :-) Enjoyed a wonderful sunny weekend with lots of swimming in the waves, seafood and hedge veg  (Guernsey thing, veg/fruit/eggs etc for sale by roadside). Last time for staying at this site though, loos are a million miles from tent (ok probably 100m) and it's just too far to walk there and back when tired. As for the showers, they were even further so didn't happen. Bathing in seawater for four days didn't do me (or my hair) any harm ;-)

#ThinkHand #Chariot-MS

Is being unable to walk so bad? 

Hannah Cockroft, 3x Gold, Team GB Rio 2016

I don't know, is the truthful answer, as I can still walk. A bit.

I've always thought of people as either being able to walk or not i.e be ambulant or wheelchair-bound. In reality, if not born wheelchair-reliant, abrupt transition to using a wheelchair all the time only happens with things like (for example, not exhaustive list) physical injury, stroke or MS relapse. Progressive (worsening over weeks, months, years) MS is by nature a gradual process as nerve axons die and neuronal reserve  (alternative pathways) is lost.

Two years ago I was managing to walk up Glastonbury Tor every weekend. It was getting harder. Then the walk to work with climb up stairs when I arrived became a challenge. Early last year I got caught out at a craft fair, just being on my feet milling around caused me to look round frantically for a seat after 20 minutes.

And now I am a wheelchair user. Sometimes. But not always, or often even, thanks to Charlotte and Harriet. I am grateful for the privilege of gradual easing-in to wheeled travel I view my chair as welcome rest and am always relieved to be able to sit in it. My heart goes out to those who find themselves having to deal with the enormous psychological adjustment needed to be suddenly wheelchair-bound. I will get there too, one day, but I have time to mentally prepare and deal with it.

But what about use of my upper limbs? Now that I feel more strongly about. I do everything with my hands after all and cannot imagine being without them!

Two brilliant initiatives by the team at Barts MS are the Think Hand campaign to raise awareness of this issue and the proposed ChariotMS clinical trial of generic cladribine (that drug again) for people in wheelchairs. Incredibly, to date, people with more advanced MS have always been excluded from drug trials and even when people with progressive (gradually worsening) MS have been included the results never appear great due to the dogma of using walking as the outcome measure.


https://www.youtube.com/watch?v=BrIShODY83g&feature=youtu.be

It's better by bike

Why is it easier to pedal than walk?

We've just enjoyed another trip with our tandem, this time in Fort William in the Highlands of Scotland. Spot Ben Nevis trying to hide behind a cloud ;-)

I can ride our tandem Charlotte with John for about an hour (10 miles or so) before fatigue sets in and nerves fail to get the message through to my muscles. It's a gradual thing, in practice John contributes more and more power and I less. The well-worn tandem insult 'she's not pedaling at the back' is in part true ;-) A welcome rest for photos here (near Port Appin)

Getting off is interesting, John has become adept at leaning round, grabbing my left leg and lifting it over the rear allowing me to disentangle from the tandem and collapse to the ground to recover. Tandem Club friends, family and even complete strangers have stepped in to assist with this many times. If insufficient recovery time available the reverse exercise must be performed to get me back in the saddle again. Recovery time is best spent in cafés :-) or in the Highlands, ferries were a welcome rest too ;-)

My pal Justin in France is the same age as me, has similar MS and yet cycles solo. He's an ace cyclist and regularly does long hilly rides in the Pyrenees. His neuro in France cannot understand how is still able to cycle so well and once commented that if he were unable to cycle he would probably be using a wheelchair to get around! Justin loved the irony of this, as his love of mountain-biking in his younger pre-MS days had on numerous occasions almost put him in a wheelchair. Despite his amazing cycling ability, Justin often relies on fellow cyclists to lift him safely down from his bike to rest before he is able to stand. If cycling alone he has apparantly perfected a technique of falling off into a suitable bush!

This was Justin and me during Justin's fundraising ride from North Wales to the Pyrenees in August 2016. We are demonstrating our n=2 study showing that MS is not linked to genes controlling height.

Stop press - prolonged lymphopaenia post dimethyl fumarate (Tecfidera)

News to me this one! When I presented at hospital in March I was told my  lymphopaenia (0.59) at 14 months post Tecfidera was unrelated to the dmf and to ask my GP to refer me to a haematologist. Which I did.

Learned this week from the Barts blog
http://multiple-sclerosis-research.blogspot.com/2017/07/clinicspeak-casestudy-lymphocyte.html that prolonged lymphopaenia (months/years?) is common and it is possible some people may never return to baseline. Demonstrates the importance of MS specialists keeping in touch with latest research and clinic findings from other centres. Simply following the Barts blog is one easy way to do that for a start.  If I as a mere patient can pick stuff up then anyone can.

Anyway, this requires a spot of replanning. My treatment preference is still off-label cladribine:
http://multiple-sclerosis-research.blogspot.com/2016/01/the-special-one-cladribine-acting-in-cns.html


Neurologists look for a baseline of 0.8 (or 800) depending on which scale* you are using. Indeed, this is the figure stated in the 'Movectro' (old brandname for clad) datasheet. Factor in my lymphocyte profile (lacking CD8 T cells, they keep a look out for viruses and tumour formation) it would be good to get back to my old baseline of about 1.0+.  I think it is a case of being a patient patient. Another year or so shouldn't make much too much difference in the grand scale of things?

Maybe not, but what if investigations show loads of active inflammation and further damage? Especially in brainstem and cervical spine (where I know there are some pretty big lesions already) - fairly critical points I understand.  Our brains are pretty amazing at re-routing around damage just like as seen in people post stroke, but not many rerouting options in spinal cord. So if things are looking nasty there are two possibilities.

Rituximab is a MAb used for rheumatoid arthritis. Would involve hospital infusions every 6 months to a year ongoing.

Autologous Stem cell therapy (AHSCT) is essentially collecting some of my haematopoietic stem cells and putting to one side to use later (Blue Peter style) then zapping my immune system with some pretty serious chemo. They then stick the stem cells back in and wait for them to grow into immune cells.  There is a centre in London currently taking NHS referrals but am pretty sure I would not qualify. But fear not for £££££ there are many centres in such far flung places as Mexico, India, Russia etc offering the same.  Would require some serious research as there are any number of variations in how treatment can be carried out and some of the clinics are probably pretty dodgy 🤪 The other thing to bear in mind is, although apparently safer these days, it's still on the risky side plus it's only gonna stop new damage - many of my nerve cells are already primed to die and this would not be reversed.

H'mmmmmmmm....

*lymphocytes were traditionally measured in number per litre. These are pretty huge so you get numbers like 0.8 x 10~9 (that is meant to show 10 'to the power of' 9). The modern way of measuring is number per microlitre so you get numbers like 800.