Posting in real time at last!

Having spent the last week writing up my MS history it is a huge relief to be posting news in real time. Today I had a phone call from Barts NHS Trust Royal London Hospital to agree an appointment date! First available date agreed 5 September 2017. Yay! Next step to some form of treatment I hope, or at the very least further investigation...

2017 making a plan

January 2017

So how to get started on some sort of disease modifying treatment (dmt)?

Made a list of all available licensed dmt in UK. One by one I struck a line through them all as either ineffective (interferons, glatiramer), contraindicated (fingo), unsafe due to lymphopaenia (fingo, dmf, teriflunamide) or unavailable as I wouldn't qualify (alemtuzumab, natalizumab).  There were some new things in development (ocrelizumab, daclizumab) but I doubted I'd qualify for these either.

Caught up with some history on the Barts blog over Christmas and read all about the Cladribine4MS campaign. Off-label cladribine sounded promising for someone like me with lymphocyte counts on the low side. Looked back at all my historical blood tests (of which there have been a lot, what with dmf, attempts at starting fingolimod, plus an historical spell of microcytic anaemia). Entered all the lymphocyte counts into a spreadsheet.  Generally, my baseline count seemed to be about 0.8 to 1.1. H'mm well let's hope it's up nearer 1.0 and hopefully I might be ok for cladribine? According to the Movectro datasheet the required baseline lymphocyte count for starting a subsequent course is 0.8.

Next neuro appointment already arranged for 15 March.  Booked blood tests for end Jan and follow-up appointment with GP.

Blood tests 25 Jan - all normal except for lymphocytes 0.60 🙁.

Booked second test for 9 March. My lovely GP meanwhile was absolutely super and agreed plan of action to (a) ask hospital if willing to prescribe off-label cladribine or if that failed (b) refer me to Barts.
GPs, in my experience, are never perturbed by low lymphocyte counts. Apparently they're really common in routine blood tests in General Practice and, unless signs of unexplained infections, nothing to worry about.

March 2016

Full blood count 9 March - lymphocytes 0.59 🙁.

Plan (a)
Hospital appointment 15 March, Didn't see my usual neuro (whom I really like and respect) but equally pleasant MS doctor whom I also get on well with.  I like going to my local MS centre, a small unit for MS, Parkinsons and dementia. I prefer sitting in a quiet waiting room with a few other neuro patients rather than hoards of folk for all sorts of miscellaneous clinics.
Disappointed with appointment on this occasion. Dr confirmed no treatment available for me (first time I've fully grasped the significance of being diagnosed 'secondary progressive').  Nor would they prescribe cladribine. Not sure she grasped the concept of 'off-label' as she kept talking about NHS England. Probably me not explaining very well, but I did leave the Barts NHS info. Maybe it's red rag to a bull leaving info from another neurology team? Next appointment in six months time. I'm not at all sure why.

Plan (b)
Back with GP. Prior to referral to Barts thought I should get lymphocytes checked out.  GP agreed little point going all the way to London to be told sorry, you're lymphocytes too low and she gave me a private haematology referral.  I asked for private (i) to speed things up and (ii) was aware haemaologist probably had more serious things to do (like treat paople with leukaemia) and I wasn't really ill, haematologically-speaking anyway.

May 2017

10 May. Saw a very helpful  haematologist who was generally pretty reassuring and said that, yes indeed, many people have 'low' lymphocyte counts. He explained that the concept that counts follow a normal distribution with 'normal' levels taken as the middle 95% values is incorrect as in practice the distribution is skewed to the lower end and number of people with values less than 1.5 is in fact high. So my GP was kinda right when she said 'everyone has low lymphocytes'. Sounds to me like the tables should be clarified as they cause a lot of confusion. So that was likely all it was. Anyway, he gave me a thorough check over (lymph nodes, spleen) and I didn't escape without about a million tubes of blood being taken 😉.

Here are the results:

Full blood count - everything normal except lymphocytes 0.50
HIV serology negative (I could have told him that, but no harm in checking)

Lymphocyte profiling (in absolute values per microlitre):

Lymphocyte profile


So what does this mean for cladribine? I really don't know.   But having come this far will press on and ask GP to continue with referral.

♧♧♧


That all done, time to head off with Charlotte for the Tandem Club National Rally in Yorkshire...

Near Skipton, alongside the Liverpool and Leeds canal. Spent a lot of time along the canal, it was the only bit of flat cycling we could find! This is why we live on the Somerset levels, the clue is in the name 😉.

2016 worsening MS

 Happy New Year! 

It's a family tradition that whenever we're visiting the coast we should take a dip in the sea. Daughter Louise has to push this to extremes so here we are at Nairn, Scotland after our New Year's Day swim. To say the water in the Moray Firth is cold is an understatement 😜😉

Back home neuro appointment 12 Jan.  As haven't had MRI for over 4 years asked if I could have one with Gd to see if evidence of MS being active.  'I don't need MRI to tell me that' he replied  'I can tell by looking at you it will be'. 'But I can't give you Campath (alemtuzumab) with your lymphocyte counts'. Fair point I thought.  No effective (but safe enough) treatment available so what's the point? We agreed there had been no evidence of 'relapses' (from my point of view it's more a case of no evidence of 'remissions') for 4 years and MS now progressive (ie worsening). Oh, I might be better using a stick? Yeah, I suppose so...

So took the rest of the year off, no Dr appointments, not one blood test, but plenty of holidays 🙂 and retired from work in April. I would like to say forgot all about my MS, but kinda tricky with searing pain across my right shoulder 24/7 and mobility that seemed to be worsening by the month....

Summer 2016

In the sea at Vazon Bay, Guernsey

With the amazing Justin, his daughter Siobhan and friend Martin who cycled all the way from Pen Y Gwryd in North Wales to the Pyrenees in southern France. Justin is originally from North Wales but now lives in southern France. Justin (far right) and I are the same age and both have secondary progressive MS. Justin's walking is nearly as bad as mine, but he's an awesome cyclist! I'm a far cry from awesome but can tandem with John balancing for us both. We joined the team for their leg across Hampshire. In total over £5k was raised for the MS Trust.

Another family tradition is that whenever possible the car is left at home for holidays. Castle Cary is our nearest train station (14 miles) so we often start start holidays here with laden panniers.

Bath, Newcastle (Tandem Club Rally), Guernsey (holiday favourite), Alistair 17th birthday and me with Elseph (white) and Elstar (brown) visiting our friends at Apple Vale Alpacas in Somerset. 

Enough photos, how's the MS?

Really struggling with the mobility to be honest. The stick that I started the year with for a bit of reassurance is increasingly needed for support. I frequently walk too far and get stuck, especially heading into town and trying to return with shopping. Still love tandeming, but need a good rest afterwards! Once made the mistake of dragging myself upstairs and getting into the bath. Had to call for help to be pulled out again! I'm learning to be more careful and know my limitations. Takes a bit of getting used to.

Charlotte (the tandem) is great, but is reliant on John being available to take me out. I seem to be losing independence 🙁. The solution is more wheels! Meet Harriet:-

Harriet is a Hase recumbent trike and she is very, very cool! She has a big shopping bag on the back and I can do exciting things, like buy a loaf of bread, go to the hairdresser's and even get as far as the supermarket, all on my own! Independent or what? Haven't yet tried taking her into a shop (she's a bit wider than a wheelchair) and I do have a problem if I've pedalled any distance that I need 15 mins to rest before I can walk much at all. Fortunately local supermarket has courtesy mobility scooters to hand to save the day! Harriet and I are in front of (or part of) the colourful gable end artwork known as the 'Glastonbury Mural' in the photo above.

And what about if cannot take Charlotte or Harriet? By the end of the year had added Mac McLaren to the fleet:-

Mac is more a Formula 1 all-terrain tail dragger (two large all-terrain wheels at front, small wheel behind) than wheelchair. He's made of carbon fibre, even cooler than Harriet and gets loads of compliments. Mac is good for walks and trips out where I'd need to be on my feet for more than 10 minutes. I'm not yet very good at pushing him off-road but gliding around a shop / airport etc on a nice smooth surface is a dream. Here we all are at the Longleat Festival of Light, it was our company Christmas outing.


New year's resolution: get some MS treatment sorted, lymphocytes must have recovered by now?

2005-2015 the first 10 years

2005 pre-MS days

 June 2005

Edinburgh Marathon 4:42 just wanted to enjoy it :-)  Comfortable 10 minute miles all the way, plus 10 mins for loo stops and 10 mins for hill at the end. 50th birthday present for my husband John.

August 2005

Race the Train, Tywyn, Wales. Third year of running this one. Still not managed to finish in under 2:30, fell over loads and vowed never again....

With our son Alistair (born Sept 1999) shortly before his 6th birthday and wearing one of my last race medals. All the falling over would later make sense.

Scotland November 2005

Had no idea what was about to happen over next few months...

Lost sensation in feet later in November, rising upwards over a couple of weeks. Private neuro appointment. He wanted me to have an MRI, another £400! Really? 

More weird sensory symptoms over Christmas holidays. 

Then remembered this thing I'd had go funny with my left eye July 2004.  Severe pain looking far left - ouch! No vision problems and GP couldn't find anything wrong. Pain gradually went away. Then about September/October was running and vision went all monochrome and blurred when I ran up hills! How weird was that? Mentioned to optician he thought the whole eye episode was 'possibly something called optic neuritis and it would get better on its own'. It did.

Had a good think.... Googled (naturally), dug out university books and old BNF (hadn't worked as a pharmacist since about 2002). Looked-up optic neuritis...tada! - MS? Of course.  Ugh ugh. Booked MRI. Sod the £400.

January 2006

Neuro appointment.  'Your MRI is abnormal'.  'That might explain all these further symptoms then.... oh, and I forgot to tell you about my eye...'  

MRI spine in fact showed 'at least' 12 cervical and thoracic cord lesions. Can radiologists only count to 12?  MS diagnosed.

'Is this why I'd started falling over all the time when running?' 'Yes, it's the MS.'

April 2006

Rebif (beta interferon) injections started.

Fast forward to 2009

April 2009 Guernsey

Third year of Rebif injections and doing well 🙂. Still cycling everywhere and climbed down the 200+ steps to Petit Port Bay.

Glastonbury June 2009

Regular Sunday day ticket visitors to Pilton whilst Alistair young, this was a good year 🙂 it was dry! Here are the Tea ladies on tour in the Circus Field.

2010

Rebif stopped April 2010 after 4 years as I'd been so well! Very happy 🙂 told everyone my MS was mild and unlikely to come to anything much...

2012

....should have known better. Relapsed July 2012. Burning neuropathic pain all down neck and right shoulder blade. Horrible. MRI brain and spine Oct 2012 sounded pretty bad, loads of new lesions on cervical spinal cord. Lots of lesions in brain too, not that there was anything to compare it with.

Rebif restarted Dec 2012. Waited for relapse to end....

2013

Relapse(s) ongoing... didn't seem to be getting anywhere with neuro at local hospital. Moved to new neuro and agreed plan to escalate treatment to fingolimod.

2014

Started keeping copies of blood results rather than leaving it all to the hospital.  All pretty normal with exception of lymphocytes 0.83 (normal 1.5 to 3.5). Rebif stopped February in bid to raise baseline prior to transferring to fingolimod.

A few photos from this year to brighten things up:

So, back in 1996 I took a few flying lessons. Didn't ever go solo, yet alone get my licence. Did fall in love with my flying instructor and we married July 1999. John doesn't instruct anymore, but does have a share in G-PCAT, a TB10 single engine light aircraft who lives on a farm strip in Somerset.

My absolute favourite photo of John and me ever 🙂. We'd swum across Fermain Bay (Guernsey) and the cold sea had numbed all the horrible neuropathic pain across my neck and shoulder, a great trick often repeated since with ice packs and cold showers.

Fingolimod aborted in the summer after all the waiting, combination of ongoing lymphopaenia saga and someone noticing episodes of micturition syncope in my notes. I was literally all wired up to heart monitors awaiting first dose! With that and the long delays on the M5 that morning (only just made it) this drug was clearly not meant for me.  'Wait for BG12' I was told.

Still keeping pretty active.  Yoga classes twice weekly plus at the weekends John and I would walk up Glastonbury Tor. Could manage a bit of running holding bar on treadmill, although not sure 2k in 15 mins qualifies as running?

2015

February 2015

Struggling to concentrate and stay awake at work. John is a Consulting Stuctural Engineer and I'd returned to college one day a week in 2003 to do Civil Engineering and work with his practice (prompted by realisation that we were paying more per hour for draftsmen than I was earning from Saturday pharmacy locums). By now I was working five mornings a week, but could literally fall asleep at my desk! Never experienced anything like it before. Mental concentration had become exhausting. 

Set off one morning to take Alistair for a hospital appointment. 45 minute journey on familiar road. Had slept well the night before and felt fine when I started. After about 30 minutes somehow ended up on the wrong side of the road, nearly killing myself, my son and the driver of an oncoming car. That was the end of my driving.

March 2015

This was the year we discovered tandem cycling. I used to cycle everywhere and badly missed my bike now I couldn't balance well enough to ride it.  You can read about it on page 15 of the MS Trust Open Door magazine (published the year after August 2016) - I'm opposite Team GB paralympian Kadeena Cox:

https://www.mstrust.org.uk/sites/default/files/August2016OpenDoor.pdf

August 2015

Meanwhile regular blood tests continue and by August lymphocytes up to an acceptable 1.11 and at last able to start BG12 aka dimethyl fumarate (dmf) brand name Tecfidera.  Yay! By about this time had also heard about the Barts MS blog in an issue of Open Door magazine:
http://multiple-sclerosis-research.blogspot.com/
Crikey there was a lot of immunology to get my head around! Dug out my 'How the Immune System Works' book.  Could hardly believe I was reading posts by highly respected Profs and Docs about the latest MS research. They sounded really human* and approachable too 🙂 answering questions from ordinary folk with MS!  Shocked by how rude a few people were and I don't really like anon comments, especially if unpleasant. This is where Annonie Mouse idea later came from.  Realised that Googling my real name brought up a string of my blog comments, whereas 10 years ago it brought up a string of race results. Time to adopt an online persona...

*two of them are actually mice, just like me! 🐀😉

September 2015

Back to some photos...

Our first big tandem adventure was cycling from Leeds to Manchester over the Transpennine trail with our (John's) daughter Louise and partner Sam.  Our bright yellow tandem is called Charlotte.

  

December 2015

Lymphocyte monitoring for dmf went like this:

04 Aug15 1.11 (baseline)
15 Sep15  1.00 (pleased with this one)
18 Nov15 0.41 (!) 

16 Dec15 0.33 (!)

I'd been told I could stay on dmf for six months with counts < 0.5 but was also aware Barts were taking 0.8 as a lower limit.  Decided to cut my losses as counts were only going to get worse. 

Here endeth another failed attempt at some sort of MS treatment.