Is Multiple Sclerosis an Autoimmune Disease?

Every dogma has its day.
Anthony Burgess

Ben Goldacre is a British physician and journalist. For the last several months his column, Bad Science, has been located above the puzzles on Saturday’s Guardian newspaper, while the regular columnist, the very funny Lucy Mangan, is away on maternity leave. As an obsessive puzzle solver, this has brought me face to face with some of the more ill-informed and disingenuous examples of salesmanship, journalism and political knee-jerkism. Among the things that Ben does is to take widely-accepted mantras, such as video games being bad for your children’s development or the Brain Gym being good for it and subject them to a little scientific rigour. The results are always entertaining and usually reveal how easily we accept mumbo-jumbo as fact. Reading his book, also called Bad Science, has changed the way I view health claims.

Mad Doctor

Igor, bring me the blood extract of a mutilated goat!

 

Ben Goldacre’s method is to examine a product, contention or therapy from the perspective of evidence-based science. He trawls through the associated advertising blurb for scientific validity and exposes potty pseudo-science for what it is. After reading Bad Science, you’ll never again be swayed by advertising copy like “Educational Kinesiology”, “Synchronised Recovery Complex” or “Pro-vitamin Enriched”.

There are plenty of theories purporting to explain MS. Some of these represent genuine attempts to understand the disease, some are barmy alternative nonsense and some deceitful attempts to sell snake-oils to vulnerable people. I shall deal with many of these in later blog entries but what I want to address in this article is the idea that multiple sclerosis is an autoimmune disease and apply Ben Goldacre’s technique to that assertion.

I shall try to avoid getting overly technical over the next few paragraphs but, if I lose you, you can always skip to the Conclusion towards the end of this blog.

Autoimmunity is the leading hypothesis trying to explain both the cause and mechanism of MS. The question that is seldom addressed but which is of paramount importance is, “What is the evidence that multiple sclerosis is an autoimmune disease?” Given the amount of research dollars invested and lives risked in dangerous treatments on the assumption of the disease’s autoimmune nature, you might imagine that scientific confidence in that nature is rock-solid. In fact, the reason why this hypothesis has moved from paradigm through dogma to doctrine is rather harder to divine than one might have hoped.

But before we can provide evidence for the autoimmune hypothesis, we’ll have to say what it is:

Though different formulations exist, pretty much all of them finger the villains of the piece to be subpopulations of a particular type of white blood cell, called a T-cell. This type of immune system cell has become programmed to attack proteins in the insulating sheath (the myelin) that coats a portion of some of the nerve cells in the central nervous system. The T-cells cause inflammation, which not only damages the nerves but also breaks down the barrier between the central nervous system and the rest of the body. This in turn allows more components of the immune system to flood in and wreak further havoc. Why some people’s immune systems turn on themselves is generally explained by a genetic propensity acting together with some unknown environmental factor, possibly a virus or traumatic injury [1].

The evidence that multiple sclerosis is an autoimmune disease breaks into two types. The first is that obtained by direct experimental observation – looking at stuff in Petri jars, peering into microscopes and the like. The second type comes from observed similarities to other diseases or by employing some good old-fashioned blue sky thinking. Essentially, this second group, though often persuasive, is what a court of law would call circumstantial evidence. There’s nothing wrong with this type of evidence, it’s just that we should only treat its findings as provisional until they have been placed on firmer footings or are rejected.

There are two main pieces of hard evidence that MS is autoimmune [2]. The first is that another demyelinating disease, acute disseminated encephalomyelitis (ADEM), has myelin damage shown to be associated with immune system cells. The second observation is that mice, which have had brain material injected into them, develop a disease called experimental allergic encephalomyelitis (EAE). In many important ways, EAE is virtually identical to ADEM. Experiments have repeatedly shown both ADEM and EAE to be caused by T-cells attacking proteins in the myelin. [3, 4, 5]

So what is the circumstantial evidence? Well, there’s a quite a lot of it but the better stuff breaks up into six categories:

  1. MRI and tissue samples reveal inflammation around plaques in the brain and spinal cord. [7]
  2. Treatments designed to prevent or reduce inflammation in the central nervous system reduce the number and severity of relapses during the relapsing-remitting phase of the disease.[12, 13 etc.]
  3. Though no one gene has been found to be perfectly linked with multiple sclerosis, several genes do show some degree of correlation and many of these are responsible for coding elements of the immune system.[16]
  4. People with MS have heightened levels of immune system cells that attack myelin proteins.[10, 14]
  5. The profile of people with MS resembles that of other autoimmune diseases such as Rheumatoid Arthritis or Lupus. That is, they tend to be young at disease onset and are more likely to be female. [17]
  6. Many important neurologists believe that MS is autoimmune and several pharmaceutical companies derive significant revenue streams based on the disease’s autoimmune nature.

All this seems like a substantial volume of data all pointing in the same direction, doesn’t it? Well, let’s look at it a bit harder before jumping to any conclusions.

The obvious disconnect with both pieces of experimental data is that while ADEM and MS can be sometimes confused in a clinical setting, ADEM is not MS. It is an acute disease that strikes once whereas multiple sclerosis is a chronic condition that erupts repeatedly, sometimes without letting up [6]. The lesions in ADEM are very different to those in MS. In fact, in one third of multiple sclerosis lesions, T-cells are entirely absent [2, 8].

This leads us nicely into our first category of circumstantial evidence: that inflammation is present in MS lesions. Well, as just shown in the last paragraph, it’s not. At least, not always. In progressive forms of the disease, it can be entirely absent as demonstrated by a type of computerised brain scan called Diffusion Tensor MRI [18], by the early alemtuzumab trials [19] and by the fact that no immune modifying treatment has any effect on progressive forms of the disease where relapses are absent.

More damning still, is a study by Barnett and Prineas published in 2004 [9, 20]. The researchers examined brain material from 12 patients with relapsing-remitting multiple sclerosis, including a poor 14-year old girl, who had died from an MS lesion affecting her vagus nerve. From this they were able to draw up a natural history of the developing multiple sclerosis lesion. The first sign of damage was wide-scale death of the myelin-producing cells, the oligodendrocytes. This was in the absence of any immune system cells. The first immune system cells to appear were not the T-cells but another type of immune system cell altogether, the macrophages. This paper is acutely embarrassing to adherents of the autoimmune school.

So if MS is not autoimmune, why do immune-modifying therapies work? Well, no one is saying that inflammation is not a feature of the multiple sclerosis lesion – clearly it is. The point is more whether the target of immune system attack is the body’s own proteins or something else, perhaps a virus or bacteria. One might expect an immune response to a foreign invader and it may be that the resulting inflammation causes some temporary or permanent damage. What is clear is that inflammatory lesions are by no means the whole picture and that, in progressive forms of the disease, the considerable disability incurred happens through another mechanism.

And then there are all these immune system genes weakly correlated to multiple sclerosis. This shouts “an immunological disease at the beginning” said one researcher [15]. Perhaps, but it could also indicate a genetic vulnerability to a particular virus or bacteria. Wouldn’t that be the most likely result of immune system mutations? A compromised immune system? That would be my expectation.

But if MS is not autoimmune, why do people with multiple sclerosis have T-cell populations that target myelin proteins? The answer to this question is not clear. All that can be said is that people who don’t have MS also have these T-cell populations, albeit at lower levels, so it seems to be a function of having an immune system rather than of having MS [21]. But the levels are raised in people with MS, so perhaps there is an element of immune system dysregulation after all. This is what some people think anyway [22] or even some level of apparent autoimmunity caused by a virus [23].

Conclusion

Men will die upon dogma but will not fall victim to a conclusion.
John Henry Newman

“Aha!” you say, “but why is autoimmunity the prevailing paradigm of both the medical profession and the pharmaceutical industry. Are you saying that, you, a nobody, knows better than all these important, learned and clever people?”

No, I’m not so arrogant as to think I know better than the experts. It’s just that the experts themselves are divided and plenty of them question whether MS is autoimmune. I’ve just looked at the arguments on both sides and presented the work in a way that seems logical to me.

I think the reason that the autoimmune theory has become doctrine might not be because of its superiority to the alternatives but more to do with how much is invested in it. It’s not just the careers of a good many eminent neurologists and research fellows but also many millions of dollars in disease-modifying treatments by the pharmaceutical industry. For comparison, look at the vitriol poured on Barry Marshall by his peers and the pharmaceutical industry when he suggested that stomach ulcers were caused by helicobacter pylori [11]. His work is now canonical.

A journalist in this Saturday’s Guardian was joking that Albert Einstein was lucky he didn’t have to apply for a research grant because he would have been unsuccessful. Anyone looking to break the mould is not going to find much support in a jury of his/her peers and that is what you need to get a peer reviewed grant.

So what do we, as people with MS, do. We could go on taking part in treatments based on the autoimmune theory – some of which, for example Hemapoietic Stem Cell Replacement and mitoxantrone, are potentially extremely dangerous – or we can ask our representatives, the MS Societies of the world, not to invest so much of their research budgets into a potentially failed Autoimmune paradigm until its veracity is firmly established.

We need them to look for the cause of multiple sclerosis as a priority.

A quick scan of the current research projects funded by the British MS Society shows that very little money is going in this direction. They have 25 projects listed under “Cause” but almost all of these aren’t looking for a cause at all or are based on the supposition that MS is autoimmune. I really don’t understand how “Finding a way to make oligodendrocytes” or “Understanding the biological mechanisms of spasticity” are to do with a cause at all. I feel another blog coming on.

Please write to your MS Society and ask them to put more effort into really looking for the cause. I did. I got no response.

Coming soon. Is Epstein-Barr virus linked to Multiple Sclerosis?

References

I’ve moved the references to this page so that people can read straight on through to the responses or the next blog. (You can click the superscript reference numbers in the blog to go straight to the appropriate place on the reference page.)

Posted in MS Blog | 4 Comments

If Dreaming Were An Olympic Sport

Everything you can imagine is real.
- Pablo Picasso

Last night and the night before I had vivid dreams in which I was running.

It was lovely. It felt so easy and natural.

In the first dream I was surprised – I knew that MS hadn’t let me do this for years. I haven’t even had any remission of any symptoms since well before 2007 and here I was running.

And it’s easy to run. You just tilt your body in the direction of travel and move one leg forward to stop yourself falling, followed by the other leg, then the first and so on.

Bizarrely, my mother was in the building I was running into. I went to find her to tell her the good news. There’s surely a couple of dissertations there for the Freudians.

In my next dream, I remembered the first one and that it had turned out to be just a dream. Here I was running to get into a utility vehicle that I had hired. “So I can actually run after all,” I thought to myself.

There was a stow-away under a tarpaulin in the back of the van. I told him I was going to Crouch End but he was welcome to stay in the back if he wanted. He told me that it was illegal to carry someone in this way so I told him I hadn’t seen him. I got in the van and started to drive away whereupon I awoke.

What does all this mean? Who knows? At least there’s a bunch of neurons somewhere in my head that have remembered how to run. Maybe? … no, I can’t think like that.

But a happy pair of dreams anyway and I hope all of our good dreams come true.

So, happy Solstice, Chanukah, Christmas, Alban Arthan, Tamil Hanumat Jayanthi, Amaterasu, Maidyarem Deygān, Dōngzhì, Hogmanay, Junkanoo, Sanghamitta or whatever festival is appropriate in the belief system to which you cleave.

Peace and goodwill to all humankind.

Posted in MS Blog | 3 Comments

Coming to terms with Secondary Progressive MS

Life is a process of becoming, a combination of states we have to go through. Where people fail is that they wish to elect a state and remain in it. This is a kind of death.

Anais Nin

My garden in June 2010

My garden in June 2010

 

One of my passions of recent years has been gardening. Planning, planting, transplanting, seeding, feeding, weeding, cutting back … the constant interaction between the plants, the bugs, the slugs, the worms and me. To garden is to create a cyclical story, a kind of soap opera – the plants grow, they flower and die back, often to return the following year. The whole pulsates with a rhythm of the seasons but each year’s garden is different to the previous year’s. Each plant is a process, emerging from its seed, growing and finally dying and being replaced. The garden is the sum of all these processes, always changing, always different.

Recently, it’s occurred to me how the understanding of the reality of processes can help me in dealing with multiple sclerosis. That sounds like an opaque maxim from a self-help book but, please, go with me on this one for a while.

When I was diagnosed with Relapsing/Remitting MS in 1999, it felt like a bit of a disaster. I was going through a divorce at the same time with all the associated events like losing my home and seeing much less of my children. Quite where each quantum of pain was coming from was sometimes difficult to discern. It felt like a torrent of broken dreams crashing over my head.

Gradually, I picked myself up and worked out a new direction for my life. As part of that, I learned how to live a normal happy life despite having multiple sclerosis. I think there are several ways of coming to terms with Relapsing/Remitting and the one I chose was acceptance. In essence, my thinking went something like:

I’ve got MS – So what? – Let’s get on with life.

This worked because my relapses were fairly infrequent, fairly mild and recovery was always fairly good. While I did suffer a few long-term disabilities, they were comparatively limited and didn’t much interfere with the things I wanted to do. I was able to ignore MS because it was pretty much ignoring me.

Then, at some point before 2007, and it’s very difficult to mark a precise date, I began to notice a very slow and gradual deterioration in my walking and my bladder, bowel and sexual functions. This was not related to any relapses because I didn’t have any.

And so in 2007, the neurologist diagnosed me with Secondary Progressive multiple sclerosis.

At the time it didn’t really bother me – inevitably I’d been following my own condition so I already knew I’d reached that stage. But by creeping up on me the way it did, I failed to take in what progressive MS meant personally. I’d been used to being able to walk fairly well and now my range was being restricted. I’d been having mild urinary and bowel symptoms but I was managing these as they developed. This was made easier by my reluctance to talk about them to anyone non-medical, which, to an extent, kept them out of my consciousness. In any case, the severity of both waxed and waned so I could always look forward to an improvement when they were at their worst. The sexual dysfunction was responding so well to medication that it had ceased to be a problem.

So, yet again, I was being lucky. I know that for some people, progressive MS races away and, within a few short years, they become profoundly disabled. And so it wasn’t really until this year that I realised that I’d reached a level of disability that was significantly impacting into my life. The problems thrown up were different enough to those of relapsing-remitting MS that it’s only recently become apparent that the coping strategy I had been using was no longer working.

Secondary Progressive is all about changes. Nothing stays the same. One by one physical functions start to deteriorate and then continue to worsen as time moves on. The disease had changed from a fact to a process. I can no longer just accept it and leave it at that because the state of disability I’m accepting won’t persist long into the future. What I’m faced with now is the problem of how to manage the change – how to live a fulfilled life while some of my abilities fade about me.

And this is where the garden analogy becomes pertinent. This disease and my life are processes – in many ways the same process – just as the garden is a process. Plants wither and die but I don’t stop gardening because of that. I manage the loss by planting new flowers. So it is with secondary progressive. As I lose the ability to do something, I must not only come to terms with that loss, but I must also replace it. I used to love long walks in the countryside but I can’t do that anymore. I accept that pleasure has all but gone. Of course, I can still use a scooter to continue to enjoy nature but the physical quality of the pastime is dead. I have accepted the loss of this activity and replaced it with Modern Jive dancing (see my last blog entry).

Now it feels that there are an almost limitless number of pursuits waiting to be promoted into my life – clay modelling, painting, studying, reading, finishing my novel, web site work, chess … and the list goes on and on.

But some things cannot be replaced – instead they must be made to work. They demand to be satisfied even if I lack the physical resources, for example bladder and bowel function. Thus far, I’ve been able to manage these types of loss with medical help and I’ve every reason to believe that I can go on doing this well into the future. Again it’s like the garden.  I have outbreaks of powdery mildew on my geraniums and take steps to control it and rescue the plants. The change is managed.

I won’t pretend to have devised a flawless method of dealing with progressive MS. Each new level of disability is a blow and I’m still working on how to address the concomitant loss of status. But I’ve got a work in progress and, with the other things happening in my life, the future looks rosy.

The garden, on the other hand, has been rather neglected of late. I can’t blame my disability this time – there’s nothing there that I can’t manage or that my children won’t do for me. No, this is down to laziness.

 

 

 

Posted in MS Blog | 6 Comments

Let’s Face the Music and Dance

A screen test report on Hollywood legend, Fred Astaire, allegedly read, “Can’t sing. Can’t act. Balding. Can dance a little.” Of course, Astaire could both sing and act and was such a good dancer that even The Bolshoi Ballet was impressed.

And someone with Secondary Progressive MS? Me for example? Surely it would be no exaggeration to say, “Can barely walk. Can’t dance. Can stand a little.” Well, you’d have thought that, wouldn’t you? And though it’s true that I can barely walk, I figure that standing a little is all I need to dance a little.

And so I’ve been doing Modern Jive lessons.

I know. The whole idea lies somewhere between “Are you insane?” and “Is that even possible?” During the rest of this article I hope to persuade you both that I’m perfectly sane and that it’s possible.

My GP was certainly impressed and said what several other people have also said, “That’s very brave of you.”

Brave of me? Why? I’m not going into war here. I don’t anticipate getting badly injured dancing. The worst that might happen is if I lost my balance and fell over – I’m only 53, so I wouldn’t expect to break any bones. So why brave? Am I humiliating myself? Are people going to be saying look at that gimp pretending to dance? Ha ha ha! But people aren’t like that – at least not the ones I pay any attention to. So what I think they mean by brave is that I’m taking up something with a very significant chance of failure and, because I’m doing it on the dancefloor, it’ll be a very public failure.

Is that true? Am I most likely to fail?

Modern Jive is a dance form that evolved from Jive, Swing, Rock’n'Roll and Salsa. The significant change is a huge simplification in the footwork, which makes it best suited to a slower tempo – roughly the same beats per minute as Disco and danceable pop. It’s also a male-led partner dance, which means that, as a fella, I get to choose the steps we do.

All this makes Modern Jive the perfect form – I concentrate on those moves that involve the minimum of foot movement for me, while my partner twists around me gracefully. I’ll never look as good as the twinkle toes but, with arms as good as anyone’s, I can give a girl a good spin.

But Secondary Progressive is progressive – the disability gets worse and eventually I won’t even be able to stand. Why bother to learn something with which, in the fullness of time, failure is guaranteed?

Why indeed? Let’s return to Fred Astaire and one of his best known numbers, Irving Berlin’s “Let’s Face the Music and Dance”:

Soon we’ll be without the moon – Humming a different tune – And then… There may be teardrops to shed – So while there’s moonlight and music – And love and romance – Let’s face the music and dance

This is the only life I’ve got. It’s limited in time, just like everybody else’s. Right now I can do things I won’t be able to do later, so I’d better do them now. Or else, sometime in the future, I’ll be looking back at today regretting that I missed all those opportunities that my relative health allows. I have to nurture this carpe diem sentiment – this is how to defeat the effects of disability and that Mood Indigo.

There’s another man with a significant disability who does Modern Jive. I know very little about him but I urge you to watch this video if you still think that disability can’t be defeated: http://www.youtube.com/watch?v=TjAwebUSO8A

Posted in MS Blog | 5 Comments

Oh Happy Me

© 2011, Talya StoneThis is just a quick note to share my happy news.

My gorgeous, beautiful, intelligent, talented, lovely girlfriend asked me to marry her on Sunday. Of course I said Yes.

I’ll post something more relevant to MS soon but I can’t keep myself from sharing this with the whole wide world.

Posted in MS Blog | 9 Comments

When do you tell people you have MS?

I told you I was ill.

— Spike Milligan’s epitaph

My sons tell me that a common plot device in zombie movies, for example Resident Evil, is for a woman to be bitten by a zombie. She contracts the undead virus through the bite but, with self-sacrificing intent, doesn’t tell anyone. Later on in the film, she develops zombieism and is only prevented from spreading the disease further by being killed by someone who really cares for her. Should she have told anyone that she’d been bitten? Of course she should.

Obviously, multiple sclerosis and zombieism have very little in common. For starters, MS is not infectious and, in my experience, people with MS seldom try to bite others. More pertinently, for the purposes of this article anyway, whether and when to tell people you’ve got the disease is a much more complex question.

I’ve got my own imaginary little book of MS etiquette, which I call MSiquette, which I use to deal with how much and when I should tell people about this disease and how it affects me. And there are several different people I might tell – passing acquaintances, friends, family, partners, potential partners and employers. I can’t talk about all the issues thrown up with all these people in one article, so I’m going to limit the discussion to whether to be someone with MS in society. What I mean by this will become clear.

On the street where I live, people are very friendly. With some, I’m on nodding terms; “’Morning Joseph,” I might say and he might reply, “Lovely day but the weather people say it might rain later.” With others, the relationship is developing into friendship. We stop and talk about more substantive things – how Mabel is doing at Uni or what’s to be done about the noisy neighbours in number 36.

On good days, I walk better than on others but never well enough to get far without a crutch. I can’t hide my disability any more. On such days, people on my street who don’t know I’ve got MS, ask questions like, “What happened to your leg?” They’re expecting me to come back with something like an ankle sprain or a muscle tear. They haven’t anticipated me saying, “I’ve got multiple sclerosis!”

In conversational terms, this is like setting off a thermonuclear device. MS is thought of as a BIG disease – a horrible, progressively degenerative condition that will slowly reduce me to drooling ruin. How are they supposed to reply? I’ve put them in a very difficult position.

In the short term, they might say, “Oh! Poor you!” or “My uncle died of that.” What I risk is that the relationship might never develop beyond this. Once I’ve introduced myself as A Person With MS, should they talk about what multiple sclerosis is like or what will happen to me? The conversational space that should have been taken up by my actual life, most of which has nothing to do with MS, is now being given over to the disease. As if it didn’t take enough of my life anyway.

In the longer term, they might avoid me, not unkindly but because they don’t know how to deal with the issue – best to steer clear and get on with life. And who can blame them – most people’s lives are full up with surmountable problems that belong to them and this one belongs to somebody else.

So I choose not to be a person with MS. The little book of MSiquette tells me that they don’t need to know. So the conversation goes:

“What happened to your leg?”

“I’ve got a slight nerve problem.”

“Hope it gets better soon.”

“Thanks!”

And so I prefer a grey, utilitarian, National Health crutch to a beautifully made, hand-decorated stick because I don’t want to look like a person with a long-term disability. Again, I choose not to be someone with MS.

In denial? You bet!

Some days, MS makes me feel worse than on others. Perhaps I’m walking particularly poorly, perhaps my bladder is giving me gyp, perhaps spasticity has kept me awake half the night – you know the story. On such days, it’s tempting give the stock greeting, “Hello, How are you?” the full nine yards. “Oh, I’m so tired … my bladder is bad … pain … woe is me … etc.”

But before doing this, I have to think of the intention. Many times people are simply using “How are you” as a stock greeting. It’s a way of acknowledging my existence, much like the “Hello” that preceded it. It’s rhetorical and not an invitation to actually tell them how am I. The little book of MSiquette tells me that, in such circumstances, the correct response is “Fine” or “Very well, thanks.” This never backfires – when people actually do want to know how I am and can see that I’m clearly not doing well, I just look brave and that works for me. Better to be admired than pitied. It even makes me feel better – I really do want to be someone who lives a fulfilling live irrespective of what this disease deals me – and part of that involves failing to acknowledge as much of the disability as I can get away with.

So with all but my closest friends and family, I choose not to be a person with MS and the conversation goes:

“Hello Paul”

“Hi”

“How are you doing?”

“Really well, thanks! How are you?”

When I was first diagnosed, I was very unhappy about it and spent too much time whingeing about it to my friends. It was a mistake and, eventually, one of them cracked and told me so. He was right. How much complaining can friends, and even family, be expected to put up with? I want an equal relationship and not one where I’m the token cripple whom every one pities.

To a point, I have to talk about MS. I have to cry off some events because, for one MS reason or another, I can’t come along and it’s easier to be straight about why. What I try to limit is the complaining. I don’t know how well I manage but I do try not to be a person with MS even when I’m among friends.

Another similar situation arises when other people need space to be ill. When someone complains of, say, sore heels, it would be easy to say, “Well, that’s a trivial complaint compared with the MS that I deal with on a daily basis, so you should get over it and stop complaining!” Apart from being route 1 to losing friends, this is really not very sympathetic approach. Everybody needs to complain about their ailments and my little book of MSiquette tells me to listen sympathetically. Besides, my MS doesn’t cause me much pain and there are a lot of much lesser conditions that are agony. I can count myself lucky.

I hope you never get bitten by a zombie but, if you do, for heavens sake tell someone as soon as possible. Should you tell people you’ve got MS? Very often, I’d say no, don’t tell.

 

Posted in MS Blog | 2 Comments

Sexual Dysfunction in MS

Strong stuff for the first substantive blog, don’t you think? Well, it could have been worse – I was going to write a piece about assisted suicide as Jack Kevorkian had just died and Terry Pratchett had just made a documentary on the subject. Then a friend rather wisely pointed out that the topic might be a little gloomy for a first go. So I’m switching to sexual dysfunction because that’s what’s eating me up just now.

Warning: I’ll try to deal with this subject as sensitively as I can but inevitably there will be some details that are pushing at the envelope.

Let’s begin with a joke – surely erectile dysfunction must be a shoo-in as a subject of humour. Laughs about this aren’t going to be HARD to think UP especially with Google there to help. Well, no. It turns out that the majority of gags are about Viagra and not funny. A bit like sexual dysfunction really. Not funny.

Most symptoms of MS are not funny but, if need be, you can bend them, or more particularly people’s attitude to them, for a laugh. That’s more difficult with sexual dysfunction. If my partner finds my failings in bed difficult to deal with, that’s so not funny. Humiliating more like.

It’s like acne erupting at puberty when you really need to look your best, proving that there either is a god or there isn’t, depending on how you construct your arguments. How can life be so mean unless there is an intelligent power pulling the strings? The unhappy coincidence of sexual dysfunction is that the nerves serving the genitals exit the spine very nearly at the bottom of the back. That’s below the place where the nerves serving the legs come out. In fact, it’s below everything except the bladder and the back passage. What this means is that sexual function is amongst the first things to go wrong when MS becomes progressive. Many people with MS who have permanent damage to their ability to walk also have sexual issues. I can’t speak for everyone here but, for me, that is a cruel twist of fate indeed.

Clearly, there is a broad division in sexual dysfunction – male difficulties and female ones. The problems each gender face are quite different to the other’s. So here’s an invitation: should a woman like to write a piece about female sexual dysfunction in multiple sclerosis and send it to me, I’d be more than happy to publish it here provided it’s of sufficient quality. Email me before writing it though. Me, other hand, I’ve only got experience of the male side of the equation, which can be broadly summarised as erectile and orgasm dysfunction.

Right now, I’m going to write about erectile dysfunction (ED) –I’ll discuss orgasm dysfunction in a future blog.

So let’s start with the bad news: erectile dysfunction is a very common symptom of MS and is distressing both to the affected individual and his partner. It can manifest itself as an inability to achieve an erection or as a failure to sustain one for very long. The cause can be psychological – depression, for example, is a common trigger – or it can result from a variety of physical causes including the sort of neurological damage associated with multiple sclerosis.

There’s something deeply humiliating about serving up a limp member to a lover. And not just for the owner either: being perceived of as sexy is an important ingredient for many women – it is part of the complex equation of being turned on. The best way to show your appreciation is to stand to attention when the moment arises. If you can’t do that, she might not be able to stop feeling a little rejected even when she knows it’s caused by MS and is not about her. Even when things function a bit, a negative feedback loop can sabotage the delicate balance. Worrying about whether things are going to work properly makes them not work properly. Of all the things in the universe, it’s only your own penis challenging your masculinity. Oh the irony!

So here’s the scenario: two beautiful people lying in the conjugal bed, the air redolent with exotic oils and pheromones, yellow candlelight painting shadows over their lovely forms. The mood should be steamy but it’s not – it’s flat and depressed. One side feels inadequate and humiliated and the other rejected and unattractive. Besides penetration is out of the question without working equipment.

Time for the good news!

There are a lot of treatments for erectile dysfunction and many of these really do work. This is a very manageable condition and the first, best treatment is a loving, understanding partner you love right back. If, between you, you can interpret this problem as a shared one, everything is going to work better. Once you’re on the treatment trajectory, trying out and evaluating the different potions can be a lot of fun for you both. If one concoction stops working or has unpleasant side-effects, you can easily switch to another. But exercise caution. It’s easy to get carried away and munch more pills than you should. You also have to beware of mixing treatments, including some for other conditions – basically don’t do it unless your doctor says so. Bizarrely, it’s dangerous to mix grapefruit juice with many medications, including some of those for erectile dysfunction.

At the same time as you consult doctors to find the best treatment for you, remember these top tips:

1. Alcohol kills erections. Try to drink no more that one glass (and preferably less) on nights you think you might get lucky.

2. Smoking kills erections. If you can do it, quit. I stopped over two years ago and it did wonders for me on so many levels.

3. A lot of men have their best, most dependable erections in the morning – if you can, use them.

4. Change the emphasis of sex away from your pleasure to hers – this can be just as satisfying, perhaps more so.

When I first went to the urologist and explained all the negative psychological feedback loops I was experiencing, she said, forget all of that and try this pill. She was right. All those complex thought patterns evaporated to be replaced by a handsome erection. I don’t want to reveal which of the drugs that was except to say that it’s not the one I’m using now.

There are several types of drug for erectile dysfunction. The most well-known these days are the PDE-5 inhibitors – sildenafil (Viagra), tadalafil (Cialis) and vardenafil (Levitra). All three work by blocking the action of an enzyme that lines the smooth muscle in the blood vessels that supply the penis. I don’t want to get into comparing these treatments. They each have different side-effect profiles and half-lives (the time the drugs stays active in the body) and it is up to the user and his partner to evaluate the drugs for themselves.

Another group of medications for ED are the vasodilators. These work by dilating the blood vessels but only work locally. That means that you either have to inject the drugs into the penis, something many men find difficult, or insert a suppository into the urethra. The injectible drugs are Prostaglandin E1 (known pharmaceutically as Alprostadil), Papaverine and Phentolamine. Alprostadil is available as a suppository, sold under the brand name MUSE. These drugs must only be used when prescribed by a doctor. Permanent damage to the penis can result if they are not administered in the approved manner.

Another ED drug is apomorphine sold under several brand names including Ixense and Uprima. It is what is known as is a non-selective dopamine agonist and works on areas of the brain rather than the penis. In a large trial in the UK, only 15% of subjects chose to continue using the drug after two months. As a result it was discontinued as a recommended treatment for erectile dysfunction. I did manage to try this drug prior to 2006 and I can’t remember it not working. However, that was over five years ago and, for some forgotten reason, I didn’t elect to continue using it.

One of the potential pitfalls of getting ED medications wrong is priapism. This is an erection that doesn’t go away. Although that might sound fun, especially to those who struggle with ED, it’s actually very painful and considered to be a medical emergency that can have very nasty consequences which I don’t intend to dwell on here. If you have an erection that doesn’t go away after four hours, consult a doctor immediately, preferably in a hospital environment.

Less pharmacologically invasive, are the vacuum devices. There are several of these approved by the FDA and they work by reducing the pressure around the penis thus allowing more blood to flow in. The blood is then trapped in with a ring and the whole contraption removed. The ring must be taken off after 30 minutes otherwise harm may result. It is important to receive medical guidance before using such devices as serious damage can be done to the penis by using cheap appliances incorrectly. Too much suction can burst blood vessels. For the same reason, never ever use a vacuum cleaner as a substitute! Some couples find vacuum pumps unsatisfactory and inconvenient – apart from anything else, the penis can get cold without a running blood supply. On the other hand, a small study in London found a small but significant increase in penis length as an accidental by-product of using a vacuum pump.

And when all else fails, there is always surgery. This is usually the last resort and, even then, only tends to be needed for men who have resistant psychogenic impotence (caused by psychological and not physical factors). There are a variety of prosthetics available ranging from simple permanently erect implants to hydraulic devices that can be pumped up or deflated by pressing a button located out of sight behind the testes. Generally, inserting a prosthetic destroys one’s natural ability to achieve erection and is usually accompanied by a slight reduction in erect penis length. That said, failure rates with penile surgery are very low, devices tend to be very discreet, the erections never fail and studies show a high level of patient satisfaction.

Posted in MS Blog | 1 Comment

Launching the MS Blog

He slept beneath the moon
He basked beneath the sun;
He lived a life of going-to-do,
And died with nothing done.
– James Albery

“Could do better.”Computer Error

In what my children call the olden days, teachers would regularly use these three little words in school reports to describe the performance of their students. I know they were used to summarise my achievements on several occasions. Oh, the burden of unrealised potential.

These days, teachers can’t get away with this kind of glib dispatch. Now, reports must be a lot more detailed and show that the writer is not only familiar with their pupil but also knows the level they are working at and the steps needed to reach the next rung.

But these words can still be accurately applied to me. And especially in relation to this web site. After showing so much promise in its early days, the site has fallen silent for far too long and it’s all my fault. I could do better.

And I will do better and this blog is the place where that happens.

MS MonsterThe idea is to write every week or so about a range of MS related issues – living with the disease, living with disability, living with other people’s views on disability, the politics of MS, new drugs and some of the other peculiar beasts that roam about in my head.

Beyond this, I’ll try to get the rest of the site back into shape. The news won’t come back in quite the way it was – the amount of effort involved precludes that. In fact, it was the sheer volume of work involved in collecting the news that so exhausted me and brought about this long hiatus. Nevertheless, I will try to summarise the major MS news stories – those that make the National Press – but I won’t go hunting about in local newspapers for smaller, more personal stories. Heart-warming is too back-breaking.

And yes, because it’s a blog, you the reader will have the opportunity to make your thoughts known provided you do it in a way that doesn’t cause offence to other readers. Disagree with me all you want but don’t call me names. Write on.

All that remains is for me to get the software working – so I’m off to bury my head in the workings of WordPress. If you’re reading this, it means I succeeded – if not, you won’t even know I tried.

Posted in MS Blog | 17 Comments