Happy fifth Birthday to my Multiple Sclerosis
It was five years ago today that Dr Naraporn Prayoonwiwat of the Bangkok Nursing Home diagnosed me as having Multiple Sclerosis. After a short-lived period of semi-paralysis of my left leg and arm in 1995 which seriously impaired my enjoyment of a gig by The Stranglers, and a bout of optic neuritis in 1996 that was cured by steroid tablets and two anti-inflammatory injections into my eye (the second most hideous medical procedure ever inflicted on me), it took a period of spazziness and trembling of my left arm in 1999 to bring me to Dr Naraporn’s clinic. I was very lucky, because although MS is highly unusual in Asian people, Dr Naraporn had worked in the west and knew MS when she saw it.
As quick as you can say "Yes, I have medical insurance", I was in a private room with 1000 mg of methyl prednisolone dripping into my left arm, and undergoing a lumbar puncture. This is the most hideous of medical procedures; you curl tightly into a foetal ball while a
hypodermic that makes a knitting needle look like a flu jab is shoved between your spinal discs and cerebrospinal fluid is withdrawn. Should this ever happen to you, here’s my advice: drink gallons of coffee as caffeine prevents the LP migraine, demand pre-skewering valium, and don’t move a fucking muscle for the 20 minutes that the needle’s in there.
The next day got me an MRI scan (the third most hideous … you get the picture) and a formal diagnosis of Multiple Sclerosis. I was given some prednisolone steroid tablets to shut down my immune system so that my nerves might be given a chance to repair themselves, something else to counteract the acne that the steroids cause, Triludan to stop the neural pain and something to counteract the abdominal spasms that the Triludan cause.
Then, it was to internet cafés for hours to google for English language information. It was Jooly’s Joint that I found, and that helped me a lot (so it’s especially pleasant that a few years later I met Jooly in connection with Web Accessibility without even realising it was the same Julie Howell). Also, my colleagues at Bell Thailand made it bearable by covering my lessons and being lovely to me.
Five years later, I’m still well - I get tired quicker than I did 5 years ago, but then, who doesn’t with two young kids and a rock-star lifestyle? I still work, drive, drink, and smoke, although seldom simultaneously these days. My comparative wellness is not a sentimental story of my Herculean willpower triumphing over adversity or any bollocks like that, but purely the physical lottery of the disease. I’m simply lucky to have only 2 lesions, in the top of the spine and none in the brain. The only things I don’t do any more are womanise (and that’s nothing to do with MS, that’s because I’m terrified of my wife) and play guitar, as the last MS flare-up damaged fine motor control in my left hand. Some people who’ve heard my songs might consider the guitar-curtailment a blessing, however.
For me, to be honest, the worst thing about MS is the uncertaintly. Prognosis can only ever be statistical, rather than individual; I may never have another relapse again - or I may wake up tomorrow and find myself permanently in a wheelchair or blind in one eye. It’s purely a percentage game. It makes getting a simple cold a nightmare - could this be the time when my immune system, awakened by the bug, starts again at destroying my own spinal cord?
If you’re unlucky enough to have been diagnosed as an MSer recently, don’t despair; don’t deny it and wear yourself out, but don’t let it limit you - or even worse, define you. Here endeth the feelgoodbullshit psychobabble: Happy Birthday, incurable degenerative spinal disease - you bastard!
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September 5th, 2005 at 9:26 pm
I am somewhat amused by your story rendition, until I consider the seriousness of your statement “Should this ever happen to you, here’s my advice: drink gallons of coffee as caffeine prevents the LP migraine,”.
The Coffee/Caffeine is what causes Multiple Sclerosis to start with. I refer you to my blogsite:
http://www.multiplesclerosis-journeyintohell.blogspot.com
August 23rd, 2006 at 6:25 pm
Well, Col Karl Moates, I’ve approved your comment. But I don’t believe that coffee causes Multiple Sclerosis.
Would you be so kind as to describe the physical process by which caffeine taken through the gut causes the demyelination of the nerves in my upper spine?
Thanks.
August 23rd, 2006 at 8:04 pm
The funniest and most accurate description of the MS experience that I have ever come across! Thank you!
I too have suffered the ON bout, the indignity of the LB and the deafening torture of the MRI (where you’re too scared to move in case they make you start all over again!)Good to hear you’re still going strong - I think I’ll remain in denial for a little while longer meself
November 9th, 2006 at 10:04 am
Love it! this is the first (ms) site i have come across that actually made me laugh! I have just had my diagnosis after two similar bouts and was looking for info ( i didn’t ask many questions as my doctor was a bit George Clooney and i couldn’t concentrate)i just sat and giggled and said something stupid like ” well i wonder what will tingle next” keep up the good work!
ps i got the lp headache (drink lots of coffee)
December 12th, 2006 at 3:50 pm
Keep well, Susie(s)!
December 15th, 2006 at 3:39 am
Newly diagnosed here and found your article a riot. As people continue to say “oh I’m sorry” when I say I have MS, it’s refreshing to see someone with a good sense of humor about the whole deal. I’m not dying tomorrow unless that truck hits me, k?! Nevertheless, just wanted to say I hope you’re still doing well. And that it’s a shame you had the LP when you did as mine was virtually painless. Having my blood taken afterwards was more painful! Yeah for medical advancement!
March 8th, 2007 at 10:08 pm
Hi Amy, still doing well, thanks and it’s nearly 8 years now! Glad you’ve kept your sense of humour, as diagnosis is a very emotional time. Have you visited Jooly’s Joint yet?
March 9th, 2007 at 8:24 am
Hello Bruce
Going to agree with about LP, but disagree about MRI - I rather enjoyed it. It was noisy, but less unpleasant than (a) our local tree surgeons at work all day or (b) drunks having max-decibel arguments outside the window at 3 a.m. And they give you headphones (take a CD!)
And the MRI radiologist made me very comfortable - good support for the legs and the “bed” was slightly warm. So I spent half an hour or so practising my deep breathing - which keeps you very still. Results excellent (well, leaving aside the “You have MS” bit.) I could cheerfully have stayed there for a lot longer.
But I do SO agree with you about the feelgoodbullshit. I keep on wanting to know what they’re hiding from me - they talk so much like politicians or preachers.
“You have MS, but it’s not the end of the world.” (Yes, OK that bit I can see). “You may need to make some lifestyle changes.” (Such as?) “You must change your diet and your sleep patterns, you must take more exercise, alter your house, re-jig your finances, socialise with lots of other miserable bastards, inject yourself every day and prepare for blindness, incontinence and immobility. Apart from that just continue with your life as before and keep cheerful.”
Right. I have a nasty suspicion that I’m not going to be “a good patient.”
April 15th, 2007 at 2:26 pm
That made me laugh! I only ever went to one meeting of my local MS Society. So gloomy, I never went back. (More about that)
April 15th, 2007 at 6:46 pm
Thanks for the good laugh!! That is what we all need, and lots of it!! I have been DX recently, and I agree that LP is freakish, and I will not get another for comparison I already informed the neuro. BLECH!
For the MRI’s I was actually falling asleep during my third one…LOL, then startling awake over and over. Bizarre. Guess you get more used to it in time.
May 14th, 2007 at 10:08 pm
Best of luck to you, Jenn. Hope diagnosis doesn’t mess with your head too much.
Take care, and stay well.
May 15th, 2007 at 12:23 pm
Thanks Bruce; humour is ALWAYS better than morose monologuing.
I actually like MRI’s. Like Jenn, I find myself dozing off to the rythmic hammering in my head. The single WORST physical pain inflicted in my personal MS experience is the EMG (electromyogram)– sheer electrical torture!! I have a pretty high tolerance for pain but that procedure left me weak, sweating and wishing a slow and painful death upon Dr. Melville, sadist.
April 28th, 2008 at 12:31 am
I have had MS for 25 years and just heard that coffee can halt MS. Hey, I have swam and used stationary weights for the past 25 years and have all the disabilities that accompany MS. I have four kids, sons and an adopted daughter from Haiti.
July 12th, 2008 at 7:17 pm
This is the most refreshing site I have seen in a long time.
I was researching caffeine and MS? I drink loads of Tea at work- Do you think that might help?
But like you Bruce my guitar playing days came to an end when the Left hand went numb. Maybe I should swap the guitar round like Hendrix but hey I am waiting for a Miracle.
Fortunately I never had a LP just 2 MRI’s. I too thought that it was quite cool. I also avoid MS centres I am still in denial.
Thanks.
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