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is shoved between your spinal discs and cerebrospinal fluid is withdrawn.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!

45 Responses to “ Happy fifth Birthday to my Multiple Sclerosis ”

Comment by Judy

Can I contact you by email – if so please send details to the above email address.
I would like to send you an MS story

Comment by Bruce

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.

Comment by Susie

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 ;-)

Comment by susie (2)

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)

Comment by Amy

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!

Comment by Philippa

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.”

Comment by Jenn

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.

Comment by Kaye

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.

:-) Kaye

Comment by Mary

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.

Comment by Simon

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.

Comment by Bruce Lawson personal site Happy fifth Birthday to my Multiple | Joint Pain Relief

[…] Bruce Lawson personal site Happy fifth Birthday to my Multiple Posted by root 33 minutes ago (http://www.brucelawson.co.uk) Proudly powered by wordpress entries rss and comments rss have you visited jooly joint yet comment by philippa april 15th 2007 at 2 26 pm fortunately i never had a lp just 2 mri i too thought that it was quite cool Discuss  |  Bury |  News | Bruce Lawson personal site Happy fifth Birthday to my Multiple […]

Comment by Rachel Gladwin

Hullo Bruce, I read your blog and laughed. Thanks for cheering me up about the diagnosis process. I was feeling guilty about probably causing my MS through my gargantuan coffee consumption and now feel a lot better!! Please carry on with your contribution.

Comment by Jenny Thomson

I chuckled out loud through my MRI scan – the weird and wonderful noises were so ridiculous. (LP a different matter entirely.) I’ve had MS for nearly 30 years and am still feeling good. I started drinking coffee – proper espresso coffee – in my late 20s and have had a better time of it with MS since then – fewer relapses, and less severe. Almost without fail I have a good double espresso each morning. No idea whether it has helped me to keep on top of the disease, but it certainly improves my enjoyment of the day. But the main thing that has helped my MS is slowing down a little, controlling my diary, and prioritising what makes me feel good. Life is very good.

Comment by Rebecca

Ha. Made me laugh heartily, all these postings. How sick I am of hearing “how awful”, “how dreadful”, “I’m so sorry for you”, “you could end up in a wheelchair”.
The thing is, until these people say these things to me, I feel just peachy. And then some well-intentioned wally starts considering their own reactions to my MS-hell as more important and in need of airing vocally than considering my feelings and my reactions. Rarely people say “and how do you feel about this?”. And when they do I love them, because it gives me carte blanche to moan in great depth about the crap that is MS. Even when they glaze over I am still going strong because I bloody well need to.
And my MRI scan was the most restful and cathartic axperience of my life. I listened to Puccini’s La Boheme full volume and I was “at one with myself” for the four hours it wook (multiple brain and spine lesions take a helluva long time to scan).
Keep writing this blog – it’s fab!

Comment by Kari Luoto

Caffeine causes ms-syndrome, there’s no doubt about that. Caffeine elevates the same stress hormones than chronic psychological stress, but it does that chemically, every second, 24/7.

Adrenaline is one those hormones. It regulates the natrium (sodium) balance of the skeletal muscle cells, so the muscle can perform in a danger situation, flee or attack. When you use caffeine daily, your adrenaline level is higher than normal around the clock, because it takes about 30-36 hours, before all the caffeine is clleared from your system.

When natrium accumulates inside the muscle cells, it binds extracellular water through the cell wall, to keep the strength of intra- and extracellular natrium solutions aven. This makes the cell expand and burst, and leak out myoglobin, that is chopped in liver to iron and porphyrins, which cause cns-based muscular and neurological symptoms, ans also panic disorder, depression, anxiety, psychosis etc.

Porphyrins also block kidneys, and cause uric acids to accumulate in soft tissues. This causes burning pain in muscles, pain spots at the fastening points of the skeletal muscles, and pains that feel kinda inside arms, legs and joints. You can check this condition by measuring your urine ph at home.

Stop caffeine complitely, take to alkalic diet, and drink 2-3 litres of WATER daily. No soda, because it causes asidosis. Avoid foods rich with purine. If you take strict actions, you may feel some pains go away in a week. I’ve been on this for about 2 years now, and I’m almost complitely recovered.

Comment by Kari Luoto

I don’t mean to spam, forgot the brains, sorry.

Stress hormones elevated by caffeine are exitotoxic, because they speed up the normal wear and tear of the brain cells (apoptosis). They also inhibit new cells from being born (neurogenesis). Disturbing the normal cycle of apoptosis and neurogenesis, distroys cells everywhere in brains and causes hippocampal shrinkage, which causes dementia. It also puts your thinking mode to tubebrained, and prevents spatial learning.

I could lecture hours about this, but let’s make it simple. I have studied brain reseach and psychosomatics from neurophilosophical viewpoint as a layman for 35 years. I am a victim of caffeinism myself for more than 25 years, and have studied caffeine research extensively for a year and a half now.

You can take my word for this, because I know this from inside and also from the scientific point of view, plus, I have cured myself after being on pension for disability for 24 years now.
Using caffeine daily, is like adjusting your car’s idle speed to double, alway rev it over to red, and keep it running 24/7.

Comment by Bruce

“You can take my word for this, because I know this from inside and also from the scientific point of view”

I prefer not to take your word for it. I like the scientific point of view, so let’s see your sources.

Citations for all your claims, please.

Comment by Kari Luoto

Too much work, been studying brains and psychosomatics for 35 years now so, I don’t think I can find all necessary links in a reasonbale amount of time. I’m not authoring scientific articles, only giving advice to ppl who want to improve their lives.

I came back from the bed in two years after giving up caffeine complitely and taking to alkalic, low purine diet. I’m almost good as new, with only some minor recurring symptoms, which are also getting weaker all the time.

I am currently trying to get the caffeine-adrenaline-porphyrins angle studied. If I manage to get through the $-curtain, a lot of ppl are going to get well, and ms-cases launched by some other exogenic trigger will have new hope, because by studying the mechanism launched by caffeine, it will be possible to detect other triggering factors in future.

Comment by Bruce

So, in other words, you believe coffee to be the cause of MS, and I should “take your word” with no independent corroboration or evidence.

OK…

Comment by Kari Luoto

I don’t believe, I know from my own experience and from all I have read about the subject. I also have a friend, who was pensioned for ms, he quitted caffeine, and now heäs playing soccer as a senior player.

There are no direct studies about this, but the connection is known. I’m not selling you anything, or talking you into something dangerous, just telling about a couple of things, that have worked for other ms-patients.

Comment by experttease

I am just interested to know how much of a soothing affect tea has on MS, if at all, compared to coffee. It is not widely known but though both contain caffeine they are chemically subtly different. What is widely known is the kick a nice strong double espresso gives you (I love this every now and again), compared to the slightly more subdued effects of tea-caffeine which are sustained over a much longer period than coffee. So, simply, does tea offer any comparable relief? If you haven’t tried it yet I recommend a good strong second flush unblended whole leaf Darjeeling, what I drink many mornings to get me started. Thanks for sharing.

Kari I am willing to believe either type of caffeine can aggravate almost anything, with evidence, but aggravate and cause are two separate concepts.

Comment by Kari Luoto

Tea is what made me fall ill in the first place in -84 and put me on pension. Caffeine causes ms, and I have just explained the mechanism in post 21. If there is some other factor, that launches the same mechanisms than caffeine, then caffeine can aggravate the symptoms. Other factors could be malnutrition, dehydration, or something, that destroys muscle cells.

The immediate effects of caffeine sooth some of the very same symptoms it creates in long run. This is why people have so difficult to understand how it works and how dangerous drug it is. For example, it causes rsp muscles to cramp in the long run, but relaxes them as immediate pharmacodynamic effect. When you stop using it, the relaxation stops, and the cramps increase in strength, and you get extremely hard to breath. Because the cramps get worse in warmth, you may suffocate while you sleep. It almost happened to me on several occasions when I stopped. If you think that your normal deep breath is about a yard long, my breath was only about an inch or so, and I was only semi-conscious when I woke up. I could hardly drop myself on the floor and wait until the cramps gave in a bit, so I could crawl out for an hour or two to get my lungs back in business.

Caffeine causes all the same illnesses as chronic stress, because it affects the same neurotransmitters in the brain. It is the most destructive drug in our society today.

Comment by experttease

Kari is there somewhere else we can discuss this? I am interested in your research, but like Bruce am sceptical of any such hearsay.

Bruce my question to you still stands if you aren’t already ignoring these comments. Apologies for the invasion.

Comment by Kari Luoto

Facebook, my name. I’m currently working on Terri Schiavo’s case. She collapsed, in my mind, of course, because of adrenergic storm, caused by this very same mechanism, I’m talking about. I am myself a survivor of such event, so I know how she felt, when she died in 1990. Her body died in 2005.

This mechanism causes also panic disorder to people with individual predisposition to that sort of symptom. It may have something to do with adenosine receptor A2A polymorphism, and/or other factors. Panic attack is a demo version of adrenergic storm, which is a lethal condition.

Based on the medical knowledge I have aquired, and my own experience, I believe, that this may cause a number of deaths and brain damages, that are misdiagnosed.

Comment by Denise

First of all, Bruce – thank you for this very helpful, upbeat and informative website. Kari, I would just like to say that I agree with you 100%. My own MS journey has been, if not caused by, then definitely exacerbated by my caffeine use over the last 30 years. I started drinking coffee as a very young girl and never stopped to consider exactly WHAT I was ingesting 4-5 cups of every single day of my life. Caffeine robs our bodies of nutrients, disrupts deep (healing) sleep, keeps us chronically stressed and absolutely has pushed me over the edge into MS symptoms. There is no doubt in my mind about this. God bless you for getting the word out.

Comment by Kari Luoto

The key to understand ms lies in oxidative stress, caused by the effect stress hormones have on kidneys. They make kidneys direct hydrogen waste back to the system, instead of urinary tract. When acidic deposits stay in the system, they have to be neutralized with body’s alcalic buffers, that’s why caffeine causes osteoporosis.

Unneutralized acidic waste is stored in tissue, where it causes chronic pain.

If you want to get rid of your symptoms real fast, drink clean water 2-3 litres every day as the only liquid, and for each litre, take 1/4 tsp of sea salt, which has some 90 minerals instead of two of normal table salt. Best water you can use is ionized, alcalic water.

Start alcalic diet by eating only fresh fruits and vegetables. Follow your urine ph, it should stay neutral or slightly alcalic in order to remove acidic waste. The ph of morning urine is acidic, this is because the level of stress hormones is lower at night, and kidneys can ectract more hydrogen from the system.

If you can make yourself do this, you will be amazed by the effect in just a couple of days.

Comment by Denise

I started doing what you suggest, Kari, on Saturday, 23 January. I have not had any caffeine, and I will never touch it again. If you don’t mind my asking, how long did it take for you to walk normally again? I have never been bed-bound, but I do have difficulty with my gait and balance. MRIs showed lesions in the brain; nothing in my spine. I honestly believe that my body has been depleted of key minerals and nutrients for years due to caffeine abuse and possible dehydration (due to not drinking enough pure water). Bruce – I apologize for using your forum to post these questions, but I am fascinated by Mr. Luoto’s claims because they ring so true to me personally. Peace!

Comment by Kari Luoto

My biggest problem was my right hind leg, that had gout pains in the foot and achilles tendon + a nerve damage from an old accident. The leg was stiff and cold all the time, and had sciatic pains, that made walking impossible occasionally. I could leave my walking stick after a week without caffeine.

The leg gets sick as soon as I eat something rich with purines, as meat, fish, poultry, hard cheeses etc. Wrong meal costs me two days of burning pain in those skeletal muscles, that are most stressed.

Acidic waste in blood elevates stress hormone levels, which make kidneys direct acidic waste back to the system. So, I eat only alcalic food, and feel pretty much the way I was 30 years ago, or I eat wrong and stay in bed in pain, anxiety and depression.

Comment by Denise

There are so many theories on diet – some say no gluten, no legumes, no dairy, others say no red meat and low saturated fats, still others actually promote caffeine as having some health benefits. So confusing! If you avoid meat, fish and poultry – how do you assure you are getting enough protein?

I am going to have to do an internet search on purines because I definitely want to turn this thing around!

Comment by Kari Luoto

I have never read any diet theories. I discovered, that I had keliakia, when I kept losing weight no matter how much I ate. I started gluten free diet, and gained 5 kilos in one week.

When I eat purines, I get sick so, I have to get my proteins from almonds and other safe sources. Alcalic diet has released me from more than 20 years of severe depression, anxiety and panic disorder and ms-symptoms. I don’t need any theories about that, but I like to find out how things work, that’s why I’ve lived years in medical databases following leads.

Comment by Denise

Mr. Luoto – thank you again for taking the time to answer my questions. It seems that the highly variable nature of MS itself illustrates the fact that each person has to find his or her own healing path. Possible dietary sensitivities and allergies are unique to each individual, but like you, I truly believe that caffeine does no one any good. Just the well-known and documented fact that it is a CNS stimulant should throw up red flags, especially for MS patients. I’m through with it for good. Happily, giving up caffeine corresponds with your research and that of Dr. Batmanghelidj. I was happy to see that you also suggest adding sea salt to adequate water intake each day. I am using Celtic sea salt, staying away from caffeine and eating more fruit and vegetables. Wish me luck! Best regards – Denise

Comment by Philippa

Can I suggest, for everyone’s sake, that this discussion of caffeine be moved to Kari Luoto’s facebook page.

Comment by bruce

Good idea Philippa.

And, for the sake of visitors to my blog:

I do not endorse any of the theories espoused by Mr Luoto about MS being caused or exacerbated by coffee, dragon breath or malign spells from fairies.

I don’t say that they’re wrong – I don’t know. But the number of (pseudo-)scientific terms like “neurotransmitter” or ” adenosine receptor A2A polymorphism” without a single, solitary link to any research makes me highly sceptical.

Of course, I’d be delighted to read any comments by Mr Luoto citing peer-reviewed scientific research that corroborates his theories.

Therefore, please talk to your own doctor before believing the advice of some random commentator on some random blog.

Comment by Col. Karl Moates DFM

I have been on a self-imposed sabbatical from the internet for years, yet I couldn’t resist this spirited debate. Let me clarify a few things:

I had stipulated “Coffee-Caffeine” as the primary precursors to MS lesions simply because at the time it was (and may still be) the primary precursor in numerous ways! Yet don’t forget about all the other caffeine/alkaloid sources used in addition either primarily or concurrently. Now you have the proverbial firestarters. Now add in a few other ingredients into the witches brew and voila, a disorder is born!

I am so glad to read intelligent commentary on this subject. You don’t know how close you are…
Hang in there!!!!!!!!

Comment by cress

Its a first for me on here but I am happy to have this lovely illness when I read all your happy banter. I am so scared to say I have MS, work will discrimate, People tell me I am a liar (which they have done). Why because I am not in a wheel chair. The brain is quite deceiving but when you walk down the street and you feel like your feet are going 10 feet under, livig in a world that is spinning constantly and the flash of lights practically destroy you, and that good old loss of vision, they are probably right what do I know. I just feel, weird, tired, terrified of getting the loss of gravity. But after my second diagnosis in France, I decided enough was enough, no more living alone with the dreaded disease, so I found a doctor, married him and now feel insured for the future….Still will not take any medicine though. Keep positive..