So here I am, a 69-year-old man with Primary Progressive MS (PPMS). I'm driving in a car fitted with hand controls, as with an EDSS of 7 I’ve not been able to operate the pedals safely since 2012, and I'm reflecting on what I've learnt during my journey with MS.
A stay in intensive care
Looking through my MS rear-view mirror, the most recent thing I can see was in 2019, my flirtation with death. I was in intensive care for six weeks, followed by eight months of intensive physiotherapy. The cause? I had decided to sign up to a treatment, which turned out to be a risky and unapproved treatment based on ultra-high doses of vitamin D (70,000 international units per day). Developed by a Brazilian professor of neurology, it supposedly achieved good results for people with MS (PwMS). I had a rummage around the internet and convinced myself it was worth a try. I couldn’t find a doctor to work with me but came across a neuropath, with MS, who’d undergone the treatment.
Four months later I was in intensive care with pancreatitis, plus hyponatremia (dangerously low levels of sodium in the blood), caused by drinking 2.5 to 3 litres of water a day as prescribed by the protocol. I also developed septicaemia for good measure. Much as the neuropath protested, the culprit for this misadventure was clear. What a desperate fool I’d been for going ‘off piste' by following an ultimately risky treatment, unapproved by the medical establishment.
Lesson learnt? Only choose safe and scientifically well-researched ways to improve your prognosis.
Out of the wreckage of this car crash came a big positive, however. How had I survived? I'd been told that 50% of fit patients die of pancreatitis caused by loose cannon gallstones, which was how I contracted pancreatitis. And that’s without the hyponatraemia, septicaemia and me hardly being fit. Ultimately, although it’s unprovable scientifically, I’m absolutely certain my survival was due to the Overcoming MS Program. After all, apart from the MS elephant in the room, my general health has never been better.
That experience taught me that lifestyle and diet are of huge importance to MS wellbeing. When I was diagnosed, I should have Googled the hell out of the internet in search of safe, scientifically well-researched ways to improve my prognosis.
A little further back along my MS road in 2018 was the survey I’d taken part in for Overcoming MS. This involved tracking the 20 people, including myself, who had been on an Overcoming MS retreat in 2013 and how our MS symptoms had progressed. A crystal-clear finding was that the sooner after symptoms first appeared that one started the program, the better the outcome.
No sleep and brain fog
The next retrospective mile post way back along the road was my treatment immediately after diagnosis in 2009, in France where I live. As I have PPMS there were no disease-modifying drugs (DMDs) available. My first neurologist decided to put me on intravenously administered steroids, every four weeks. At first, it was great. I had such energy. But the downside soon became apparent, my sleep was wrecked, despite taking a sleeping pill every night.
After 15 months, with nigh on 30 totally sleepless nights and no longer able to work effectively because my brain was so befuddled (fortunately, I owned a small business with a very loyal team so was unsackable), I decided to go private. I paid for a consultation in London with one of the UK’s top MS specialist neurologists at the time. He said there was absolutely no evidence that steroids were beneficial for people with PPMS and so I should come off them straight away, which I did.
Lesson learnt? Always get a second opinion if something doesn't feel right.
I told my French neurologist that this specialist neurologist, whom he knew by reputation, had advised that there was absolutely no evidence that steroids were doing me any good. His reaction? “Well, l find they help”. I was simply aghast at his arrogance and insouciance and resolved never to see him again.
My second lesson for you is to thoroughly research any proposed treatment and, if at any stage it doesn’t feel good, question it as soon as possible. Getting a second opinion if at all possible could give you the answers you need.
A multitude of severe symptoms
Most distant in my rear-view mirror is, of course, the onset of my symptoms. In 2003, when was 50 years old and physically pretty fit, after a couple of hours hiking in the Yorkshire Dales I was suddenly overwhelmed with fatigue and had to sit down. All was well after resting for 20 minutes or so. The following year, after walking for an hour and a half, my right foot began to droop and drag. I saw my GP who prescribed physiotherapy.
My ‘flappy foot' gradually worsened, and the GP sent me for more and more physio, all to no avail, of course. At the time, I was very busy building up my fledgling business whilst also holding down a half-time university lectureship, plus doing more than my fair share at home as my wife was travelling a lot for work.
Double incontinence began to intrude, but as I could still function and was so busy, I was too preoccupied to try and find out why these things were happening. In 2006, overnight, I inexplicably lost 85% of hearing in one ear and all but collapsed with sudden, intense fatigue, in front of a seminar class. It suddenly became very difficult to articulate words in French. I had no choice but to stop work and see my GP who signed me off sick for a month, and referred me to an ear nose and throat (ENT) consultant and an acupuncturist.
The ENT had no explanation, simply saying I was extremely lucky when my hearing came back of its own accord. The acupuncture helped the fatigue, and my French came back.
Lesson learnt? Don't ignore your symptoms and keep pushing for answers
The GP didn’t ponder why I experienced this conjunction of symptoms and also didn't send me for any tests. Our holiday in the mountains in the summer of 2008 was a complete wash out, so we spent plenty of time holed up in our chalet. I started Googling possible causes of what turned out to be dropped foot. A fair few blind alleys later, in 2009, something neurological seemed likely so I contacted a neurologist who sent me for an MRI. No prizes for guessing what that showed.
Whilst I couldn’t criticise my GP for failing to think it was MS, I was so disappointed by his almost complete lack of curiosity during my consultations with him. As there were no DMDs available for PPMS at that time, you may say the delay in the diagnosis cost me nothing in terms of treatment. However, I could have discovered Overcoming MS much sooner and, as I said earlier, the sooner after symptoms appear one starts the programme, the better the outcome, according to the survey undertaken in 2018.
In case you’re wondering, I’m anything but downbeat and still find life has plenty of good things on offer.
Find out more and buy Nigel's book, 'MS a funny thing (well sometimes)' here. All proceeds from book sales will be going to MS charities, including Overcoming MS.
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