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.
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….