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.
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?
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:
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! 🐀😉
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.
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.
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