MS and Seasonality

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Recently there has been a flurry of high profile news releases regarding the optimistic results of Stem Cell MS trials – and some of the reported results do indeed appear quite remarkable. An episode of the BBC’s Panorama brought these to the attention of a much wider audience – and increased awareness of the condition (albeit focussing on the more severe end of the spectrum): http://www.bbc.co.uk/programmes/b06ss17g

But it was a much smaller study last year that has caught my attention: an investigation into the seasonality of MS relapses and their potential link to melatonin levels in the body: http://www.scientificamerican.com/article/melatonin-linked-to-seasonal-relapses-of-multiple-sclerosis/

As I struggled for years to get a diagnosis of my condition, one of the consolations I now have is a detailed list of when I suffered “relapses”, and how long they lasted. These dates show quite an amazing pattern. I have written about this before –  https://cyclingwithms.wordpress.com/2015/10/04/october-h-ill-season/ – but my relapse of the last few days prompts me to re-visit again.

I list below the dates that I have been “bedbound” (or too ill to work) by (apparently MS-based) symptoms – and can’t believe that these can just be coincidence?

2012 – 16th March to 20th March

2013 – 18th March to 30th March

2014 – 10th March to 23rd March

2015 – 22nd March to 28th March

2016 – 19th March to 23rd March

 

2012 – 22nd October to 27th October

2013 – 8th, 9th, 14th, 18th, 19th October

2014 – 13th October to 19th October

2015 – 14th October to 20th October

I do believe that there must be something “temporal” that is causing these patterns – whether it’s a change in temperature? daylight hours and their association with Vitamin D levels? or, more indirectly, the emergence of a new season’s set of bugs and germs?

The frustration is that I can almost predict the onset of a relapse (I, in fact, did so in the blog referenced above as, having predicted it, lo and behold, I was ill in bed 10 days later). I have shared these thoughts with my consultant, but, despite this, modern science can’t yet identify the physical/chemical/neurological markers that are causing these bouts – and so can’t take the steps to modify or reduce them (let alone cure them).

Roll on Summer.

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Footnote 1: Interesting to read the following extract from Roy Swank’s book on Multiple Sclerosis: “Marked changes in the temperature will be followed within a week by deepening fatigue and weakness in many patients. For this reason, in the north temperate zone, we see many patients in October and again in April-May who complain of fatigue and weakness. The symptoms last 2-4 weeks then disappear.”

Footnote 2: Remarkably Australian researchers showed that peak MS relapse rates are indeed statistically most likely to occur in the Northern Hemisphere’s early Spring – and they even gave an exact date: 7th March (looks like I’m a week or two late!) A remarkable set of data though. The current consensus is that this is linked to a patient’s Vitamin D levels (which correlate to sunlight exposure) – although scientists are aware that “reverse causalities” may be at play here: a new set of seasonal bugs/illnesses (which can trigger relapses) might just be driving patients indoors, which would lower their Vitamin D readings but only as a secondary indicator (rather than the cause) of their relapses. Interestingly the same research suggests that October is the least likely time of year for MS relapses – which clearly goes very much against the dates that I have recorded above. Fascinating stuff though -watch this space!

Footnote 3: I add this on the 13th day of the following October. I’m just spending my 6th day of the month sick in bed – buzzing with pins and needles, exhaustion and muscle ache. The predictability of this bout makes it no more bearable. I wonder if patients and scientists of the future may re-read these accounts and be amazed at our naivety once the true cause has long been discovered….

Oh yes… I remember…

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This had all gone a bit cosy.

Upbeat blogs laced with tentative optimism.

Then, all of a sudden, last weekend  MS was back, whipped up from these benign conditions like a prairie storm. Snarling, snapping and biting…. yanking furiously at its tether, spitting and evil, fangs bared and razor sharp claws unsheathed. I’d forgotten that it packed such “mean” ferocity.

The outlook of blue skies had briefly showed the smallest hint of a warning sign, a minor head cold, before – !bang! – a relapse was upon me before I’d had time to suspect it.

It seemed to affect my left-hand side the worst. My wife and I looked at my strangely curled/dropped left foot which I could no longer straighten; my left hand became all clumsy and fumbling; and the buzz of pins and needles burst into something much angrier down both legs and arms. I worried that focus in my eyes seems to be confused again… but thankfully this symptom seemed short-lived and disappeared after a night’s sleep.

So MS was reminding me – a click of its fingers is all it takes. Once again I felt like its puppet and plaything, on my knees to its strength as it selected which symptoms to activate from its own pick’n’mix sweetshop.

Exasperated; angry; upset… tired.

Growing hopes that my Lemtrada treatment might be putting off these flare-ups now seem misguided.

MS, my savage friend, needs once again to be calmed back down. Maybe he’s striking out in fear – like a panicked and wounded animal; but maybe he’s just a symptom of my mis-firing immune system and feels no more fear than a comet in the sky or pebble on a beach.

I re-read a blog I wrote last year: “bounce-back-ability”. https://cyclingwithms.wordpress.com/2015/10/12/bounce-back-ability/

Give me strength: bowed but not broken. MS certainly is a mean task-master – but when this relapse is over, I am going to get out on my bike and put him back in his box.

I don’t want to stop coming back for more…. MS, you hide in the shadow; I’m staying here in the light.

 

Battle Royale

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The Fight

“Tonight.. in the corner of hope… representing the “light side” (as well as the entire human race)… is our newcomer and challenger…. “!Lemtrada!”.

Up against him – and long-time champion of the “dark side” – is the unbeaten, tour de force that is…. “!MS!”. He will be fighting tonight, of course, with a red light-saber that flickers with the evil flames of doom.”

 

The Pundits

“Lemtrada is an unknown quantity. Our sources suggest he’s a bit of a wild cannon – (certainly don’t allow contact with your children, domestic pets… or bare skin.)

But he certainly is a modern-day fighter: more “built” than “bred” – and has spent hours and hours in the lab perfecting his one-punch style. Rumours are that he’s been honed to deliver a single knock-out blow – so expect him to come out hard and early. He emerged onto our NHS radar as recently as 2014; so might well have some surprises (good and bad) up his sleeve.

His explosive strength is unquestioned; but does he have both the staying power and the self-control that will be needed?

 

Of course, we are all more familiar with MS. He has been around for over a century – and his stats speak for himself: undefeated; and apparently impregnable. The “unmoveable object”. His style is certainly not for the purists – he is attritional and steady; but he is unerring.

His greatest strength is his ability to absorb attacks – nothing seems to weaken his resolve. Past opponents have been able to slow him down, but he has an unparalleled ability to keep on his feet, recover and then to advance again when his opponents tire.

MS is more “ephemeral vapour” than man, so the struggle that Lemtrada is going to face is how to pin him down: if you focus on one area or symptom he has a brilliant knack of exploiting another.

 

In Lemtrada’s corner is his dedicated ring-man… me.

I have prepared him as best I can through a disciplined regime of “boring, broccoli-based diet”; but now, all I can do, is to supply him with the right drugs when he is suffering pain. Gabapentine, Prochlorperazine, Amitriptyline… boosted by steroids when required. I’ll be throwing my weight behind his every punch, and willing him on with my every fibre.

Lemtrada also has a strong following in the ringside seats. Row 1 sees my immediate family – but there are also clusters of old friends, fellow cyclists and patients, relatives and blog-readers, many of whom are tapping away on laptops and iphones to get their up to date fight-coverage.

 

The followers of MS are less vocal – many of them a ghastly mist of thoughts and fears. Their support is less passionate and unquestionably more… eerie. But it is always there, in the corner of your eye and sub-conscience. The first few rows see “Pins and Needles” and his gaggle of team-mates: “Hypersensitivity”; “Spasm”; and “Numbness”. This is just the family section though. Behind them, “Optic Neuritis”, “Secondary Infection” and “Vertigo” are keeping a careful watch. And, in the darkened back rows of the grandstand, in apparitions hauntingly reminiscent of swirling black holes, stand the dual threats of “Immobility” and “Cognitive Loss”. The boss men. They’re drinking pints of black tar and betting wads of dirty bank notes on people’s lives as they wait to see how this fight plays itself out.”

 

The Early Rounds

“Those in the know were prepared for an explosive start from Lemtrada. He’d been packaged up in a plastic sack since birth so was fresh, rested and ready.

But even Lemtrada’s most ardent followers will have been knocked back by the ferocity of his initial assault.

If anything it was too strong: vertigo, especially, seemed to sense a weakness.

However, 5 months on, his work seems to have become more stable. My role is to rein him in with repeated early nights and lunchtime naps; taking time off work when required to try and best channel his energies.

And we can now see some results from the first few rounds.

Historically, between 1st January and 1st April, MS has reeked his worst damage. The “days of illness” that he has caused during these 3 months are:

2015: 12 days

2014: 13 days

2013: 14 days

2012: 10 days

But, this year, Lemtrada seems to have ducked and dived and avoided his worst.

In 2016 the figure so far has been 2.

This is buoying early news indeed.

They still feel like nervous times though – whenever Lemtrada lets his guard down there a little flurry of body jabs from “Pins and Needles” and “Numbness”. Never too damaging – but they quietly contribute to the mind-games going on.

 

Some early focus has shifted to how well Lemtrada has been able to recover from that early burst which took him deep into his “red zone”. On day “chemotherapy plus 1”, the white blood count was nil/zero – so the risk of being blindsided by “Secondary Infection” was high.

A normal white cell count is between 4.0 – 11.0 – so that became the targeted safe-zone.

Monthly testing shows that the score has now risen to 2.9 – so this is still a weakness – but, touch wood, “Secondary Infection” doesn’t seem to have picked up on the fact.

So, touch wood again (and again), recovery can be described as “continuing”.”

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They say the stats don’t lie.

But, in my case, neither does the bike.

2016 is 80 days old and I have cycled 2,700 miles.

It started a bit wobbly; and there were times that my body and legs felt utterly empty. But these last few weeks have been hugely encouraging.

I’m not racing. But I’m back. Happy. Riding some miles in the outdoors, desperately keen to stay healthy.

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Footnote

~11mths post-Lemtrada, and two minor relapses later, I continue to have monthly blood tests to monitor my RBC count and Lymphocytes (which were wiped out by the chemo).

My immune system is still significantly below the minimum range for a ‘healthy’ person (now at 0.9 vs a 1.5 “minimum”) – but my second Lemtrada course is in 7 weeks, so will bring my Lymphocyte count back to zero again anyway.