New damage?

A new development, over the past few days, has raised its ugly and monstrous head . On Sunday I started experiencing a little discomfort in my legs, which I did not heed. By Monday morning, this had progressed to increased discomfort with the addition of reduced walking abilities. By noon, had to admit that it was probably unwise to stay at work, particularly as I was in agony. The sensation was akin to hot needles being fired all along the inside of my legs. This sensation of extreme heat then spread to the outside of my legs. Every step I took brought on a renewed barrage of "hot needles" attacking the inside of my legs.

Once I got home, I was unable to move more than 20 steps without stopping until the pain subsided. Foolishly, I thought this had all disappeared over night, and happily proceeded to work this morning. I say happily, firstly, because I do enjoy my work very much, and secondly, because staying at home is not for me. When I got to work the pains started coming back, not very aggressive but certainly enough to warrant notice and caution.

By lunchtime I was back in the same situation as the previous day, but being stubborn, foolish and engrossed in what I was busy doing, I stayed on ... and am now paying the price for such a display of gross stupidity and wanton recklessness. I am now in exquisite agony, the burning sensation spreading upwards into my back, and down my right arm. Writing this post is not only difficult, but also painful.

As any MS sufferer will tell you, before the onset of either a relapse or flare-up, certain triggers are activated. Most sufferers recognize their particular triggers and can anticipate difficulty ahead, but never quite knowing when it will happen or what will be affected. So ... you are stuck with a warning light but no clue about anything else. It comes as a surprise to everyone when it finally happens. For example, the trigger may be that your legs hurt in a particular manner but the result is that either your arms cease to function or that your ears pop off.

These triggers vary from one type of MS to another, and even from one person to another. MS is very odd this way because no two sufferers will have identical experiences, and yet the end result is the same, namely scarring of some kind in the body. Multiple Sclerosis means "many scars". Unfortunately, the scarring is often not only physical, but this is a topic for another time.

One thing that does concern me about this present event, is the fact that these pains and resultant mobility challenges are new. I have not felt these before. According to the specialists, relapses are new damage and flare-ups are old damage reactivated. This feels like new damage, and although I do really like the people at the clinic, I do not wish to visit them for another treatment. I believe Campath helps but the treatment is harsh, and the subsequent isolation mind-numbing. The isolation is necessary to prevent exposure to a plethora of dangers which, without an immune system, could be debilitating if not fatal. Considering that I have daily contact with students, this becomes a serious matter for me ... and I have to start playing"where in the picture is Wally" with me being Wally.

So ... at present I am in a state of high anxiety, hoping to avoid another treatment while trying to find ingenious ways of getting to work (i.e. out of the house)!
{Queue in "the Great Escape" theme tune}

The club foot

The last couple of days have been uncommon in that I experienced one of the more curious and rare manifestations of my multiple sclerosis. I had not really named this manifestation, that is, until yesterday when I christened it and called it "The club foot". Unfortunately, I experienced this sensation in both feet. Let me explain the sensation.

About 4 days ago, my feet started tingling and I experienced regular instances of pins and needles. This graduated to more pronounced tingling during the following days, which, under normal circumstances and with the right frame of mind, may have been construed as pleasurable. However, as a veteran of various relapses and flare-ups, I anticipated that the pleasure would not be mine!

This was borne out the day afterwards when all feeling in my feet was disengaged. I could not feel the socks on my feet nor the texture of the carpet I was walking on. I could not feel whether my foot was airborne or on terra firma. I was not capable to distinguishing whether the ankle was contracted or flexed, without performing a visual check.

It goes without saying that mobility was, dare I say it, profoundly challenging and the source of a vast vocabulary that would have made hardened sailors blush like victorian young ladies on their first date. Each step I took was neither painful nor pleasurable, but it was hazardous and comical. I have the ability to "step outside of myself" and view myself in a very objective manner, furthermore, I can see the comical side of a great variety of situations. Whether this is a defence mechanism, or not, is largely immaterial; however, it does allow me to react to the situation in a positive way. I believe that this is important.

If I were to react to situations in a negative way, the situation would be aggravated and one step closer to a less than favourable outcome. Although I do have access to a motability scooter, I refuse to use it ... at least ... until all the modifications I requested have been completed. I do not ask for much, but I insist on having all terrain capability, fuzzy dice and a flame job. Once more I find myself rambling on.

This sensation or, more precisely, the lack thereof, lasted for two days and had various knock-on effects; such as lack of sleep, reduced mobility and back pain. The latter was caused by the awkward walking manner that one is forced to adopt. These "after-shocks" are as difficult to cope with as the principal event.

Concentration span .... gone!

Recently I have noticed something that particularly bothers me. The background is quick and simple. I am an academic through and through, undeniably and unequivocally. I have always prided myself in my mental abilities and agilities. I have always been able to completely immerse myself in any subject matter and remain at a state of high concentration for particularly long periods. During normal conversations, I easily follow the topic and, equally, can discuss complex subject matter without losing my train of thought. My brain has been my joy.

A new development has suddenly reared it's monstrous head ... for me anyway. Although I can still immerse myself in any subject matter and maintain gargantuan periods of concentration, the same is not true for normal conversation. During such conversations I will happily discuss the present subject matter and suddenly ... without warning ... the very next words that were on the verge of being formed in my mouth are erased from my mind and cunningly replaced by totally unrelated words. Words that have no bearing on the subject being discussed. Words that make no sense ... even to myself!

The look of utter consternation on my target's face clearly indicates to me that this has happened. This look is soon followed by another, that of disbelief! My intention is not to mess with their minds, however, I find myself wrestling with mine. Bringing my kicking and screaming mind back to the original topic, while maintaining an air of dignity and still trying to figure out how to make what I just uttered relevant to the topic, is ... quite frankly a Herculean task and entirely exhausting.

I do not believe that this happens to me due to either a particularly boring subject matter or person, because I have a completely different way of dealing with such instances. Furthermore, I clearly remember that the topic did interest me. During a normal loss of train of thought, one has the ability to still see the track if not the train. In my scenario there is no train and no track. It is a void.

According to the specialists in MS, trouble with concentration is one of the more regular complaints that sufferers share. I do not feel that my powers of concentration are diminishing in any manner, however, nothing else explains this event. Or is there? Perhaps it is a single neuron, the one whose sole task was to hold a train of thought, that suddenly and inexplicably misfired or, alternatively, decided to drop the connection and observe the chaos at my expense.

The mind is such a powerful organ, and yet it is also fragile. One little misfire and the intricate mechanisms, that make it work the way it does, are thrown into disarray. I still believe that a strong mind is essential in fighting MS. In the meantime, I may just stop wrestling it back to the original topic of conversation, and let it run rampant, recklessly and with "arms" in the air, along the new train of thought. I do empathize with people who will be at the receiving end of this ... but I really must have some fun too! You have been warned.

Talking in slurs

One of my more frequent displays of dignified conduct, the slurred speech, is so attractive that it merits a posting on its own. During one of these "episodes" my face starts to tingle the night before, and miniscule impulses fire all over the face. I have occasionally wondered whether this was the precursor to developing a twitch, similar to Herbert Lom's twitch in the Pink Panther movies. These twitches are not visible if you look in a mirror. Quite frankly, they are highly annoying and become more and more annoying until extreme fatigue grabs you by the throat and forces you into a coma. Fine ... I know this is a bit extreme, but you try dealing with it.

It would be nice if the story ended here, however, when the morning arrives and you wake up in a good mood, you are instantly aware that the previous nights twitching has disappeared. Hooray! Until you utter the first few words in morning to your loved ones, which should be "Good morning ... " and what actually spews forth is " ghghfoook murnnib ..". Sounds good doesn't it! Unfortunately, I may get up in the morning but I don't wake up until I have had at least 2 cups of coffee. The mind does not engage until the levels are adequate. So, while these words erupt rampantly from my mouth, I don't realise what has happened and continue with a normal conversation ... "deodghe zleeep val" which means "Did you sleep well?".

The second phrase is a dead giveaway, and I become reluctantly aware that what I think I say and what I really do say, don't match. I therefore prepare myself for a hard day, trying to communicate my thoughts to the world in general while attempting to maintain some dignity. I have noticed that general fatigue does seem to aggravate the whole event.

During such an episode, I have had to prove that I was sober, even though my speech argued heavily against this. At times it feels like the top lip has suddenly gained weight and will not be lifted. In fact, everything on your face, from the bridge of the nose downwards, starts sagging and the lower half of Bart Simpson's face suddenly finds a new home on your own face. Telephone conversations are hard at the best of times, but during such an event you become totally unintelligible.

However, you can use this type of episode to your benefit. Firstly, you have plausible deniability in your favour, because no person understands you and thus cannot hold anything against you even if they heard correctly. Secondly, you have an excuse to avoid speaking to people. Thirdly, people immediately think you are slow in the head because your speech is awkward, and this gives you the edge over such people .. you know the ones I mean ... those who try to pull the wool over your eyes, as though you don't have enough problems at that moment.

To deal with this type of event I have used 3 techniques. Firstly, to slow down the speed at which I speak. Secondly, choose the proper words for the minimum effort. And thirdly, only speak when it is absolutely necessary and completely unavoidable. The latter has proved valuable even during other non-"episode" periods.

The hardest thing to do with MS is to train your mind and body, but it is the most rewarding feeling when you can control both, especially during flare-ups and relapses. I still believe that the mind is the most powerfull weapon in your arsenal against MS.

Quest for toilets

Finding facilities and deciding upon the quickest route to them is foremost on many MS sufferers I have communicated with. Once again we are dealing with receptors that do not function at their peak. In this case the receptors are those located in the bladder, which seems to recognize that the bladder is filling up and send a signal that emptying it is required. The information that you are not given is how full it is and thus how much time you have to find the appropriate facilities.

So when you do get the signal to relieve yourself, you suddenly find yourself in a panic because other receptors are telling you that the nearest lavatory is still too far away. The specialists will ask you how the "water works" are, so they are aware that this is a common MS problem and is not gender specific. In fact, at some point you will be required to undergo the dignity of a "water works examination" which sounds more tragic than it really is. At first they may scan you (with the same scanner and aqueous cream used to scan a developing foetus in a womb) for a baseline measurement. You then drink ... drink and then drink some more. Then you wait. When they feel that your bladder has filled enough, which incidentally is about 30 minutes after the point where you are convinced that the bladder shall burst, they pull you in for another scan. During this scan they press down upon your filled bladder with the scanner, further upsetting the balance between maintaining dignity and relieving oneself in public. When they have finished, the invite you to relieve yourself at facilities that by no stretch of the imagination are near enough to reach without spillage.

Somehow you do manage, either by tying the hose into a knot or mincing your way along the length of the hospital. Neither is particularly useful. Relief is instantaneous and prolonged, but the whole drama is not over yet. Afterwards you get dragged in for a final scan. Why do they do this? It is all designed to determine whether you are able to empty your bladder entirely. Why is this important? Because most MS sufferers need to visit the lavatory more often than most non-sufferers, and the doctors think this has to do with an inability to properly empty the bladder. I am not convinced about this.

But the indignity of the "water works examination" was an experience I do not care to repeat.

Is it hot or cold

Being able to tell the difference between hot and cold is something many take for granted. In fact, it is hardly considered worthwhile mentioning, except that recently this has become a problem for me. For many years, being able to tell the difference has allowed me to make certain decisions such as "should I wear a jersey or not" and "is this water too hot for a bath". Perhaps you can see where this is going.

For the past few months I have had difficulty in determining whether something is too hot or too cold. This is true for most ambient temperatures, whereas I can still tell the difference between boiling and freezing. I first noticed this while I was running a bath for my children. I was on the verge of lowering them into boiling water for slow simmer when, fortunately, my wife came in and casually tested the water. To me the bath water was at a perfect temperature, but my wifes hand turned "cooked lobster red" and required immediate cold water treatment. Imagine what would have happened had I put my 3 year son into this water.

If you suffer from MS then this is something that you must be aware of as of NOW! Biologically, it is easily explained. Your perception of temperature is facilitated due to receptors, in and on various parts of your body, connected by
nerves to your brain. These nerves are high speed nerves, and they have to be because it is part of the body's protection system. Therefore, these nerves are coated in myelin which ensure that the impulses sent are not lost nor altered. Take away the myelin and the message may not get through.

Indeed, the problem with an inability to determine temperature has other knock-on effects. On a hot summer day I suddenly find myself requiring a jersey to stay warm. On another occasion, on a cold winters day, I found myself perspiring. Neither of these are welcome, the former will raise your core body temperature to dangerous levels if it has not already done so, whereas the latter may lead to hypothermia. I doubt any person would like any of these to occur, and granted these are extreme cases, however, the body is a finely balanced machine and little changes can have disastrous results.

I did notice, about 3 years ago, that I was hardly perspiring during the summer. This trend has continued and even now perspiration seldom happens. The result is rapid dehydration and a rapid increase in core body temperature. If you live in a hot climate and suffer from MS, you must ensure that you are never ever without a water bottle by your side. And drink regularly. Remember that your body no longer transmits all the warning signals that should be transmitted.

By proper precautions, MS becomes less problematic.

The Long John Silver Walk

Due to the hemiplegia that I experienced, the flare ups that I now experience cause this walk. 40 paces and you are shattered. Why do I call this the Long John Silver walk? Simply because one leg does not function as nature and biology had intended. Briefly, the leg loses flexibility and you end up hobbling as though you are the owner of a wooden leg. It becomes particularly strenuous ... and comical when you are faced with a plethora of stairs to negotiate. One leg functions correctly, and the other must either be swung out the side and onto the next step or (and this is harder work) it must be brought up to the same step, where after the first leg ascends the next step in the usual manner. Doing it in the latter fashion feels like you are climbing twice the number of stairs, and furthermore, once you have reached the summit, the good leg is knackered.

As an MS sufferer you develop numerous different walks to assist you in getting from A to B. Some of these look comical and awkward, but are in fact the most efficient way of moving and are less strenuous on other parts of your body, such as the spine. I have a particular walk that looks as though I am a little slow in the head, perhaps even spastic because I end up dragging one half of my body "behind me" and in particular the affected leg. Another, and probably the most common MS walk, I call the "cowboy" ! With this walk you look as though you have dismounted your horse in an undignified manner, because the distance between the feet is greater than the width of your hips. It is a very flattering walk, in fact, they all are and should be used on the fashion catwalks of London, Paris and all the other fashion capitals of the world.

Other factors that affect walking include
1) balance issues
2) numbness of the feet and legs
3) sensations of "heavy legs" where the legs feel as though weighted down with lead weights
4) limited flexibility of the feet, whereby the foot does not roll in the normal manner

In my humble opinion, it would be so easy to give in to the mobility problems that I experience, however, for me this is not an option. I have resisted the walking stick and the motorised wheelchair with vehemence.

In fact, who really cares what you look like when you walk funny ... at least you are walking, and exercising your body and giving MS a good solid fight. Walk slower and try to control more of your motion with each step. Take regular breaks, especially when your legs feel as though they are on fire (another common sensation I discovered). You now have an excuse to walk slower and observe the world around you. The remainder of the world may see you as DISABLED, but I like to think of it as DIFFERENTLY ABLED.

Are there any other amusing MS walking styles? Please tell me.

Finally, remember that many youngsters try to develop a signature walk and spend years working on one, and we have one without much effort.

You may have MS, but never ever let MS have you. Use that beautiful mind and fight back.

With affection
Silent Mike

Beta Interferon treatment

The joys of injecting yourself with a cold acid. After I was diagnosed with MS, I was given three choices:
1) an experimental MS trial drug,if
2) beta interferon, or
3) no treatment at all.

Option 3 never really made past the first hurdle, in fact it never took part in the race. The first option carried with it a few risks, not least of which was its effects on either egg or sperm cell. As I was contemplating creating my family when the first option was offered, I felt I had to decline this offer until we had a family. That left on Beta Interferon. If memory serves, there existed 5 different forms of Beta Interferon, manufactured by either 3 or 4 different pharmaceutical companies. Each form of Beta Interferon had its merits and drawbacks, but I chose Rebif. Why ? Being male, I was taken by and wanted the GADGET used to inject yourself with. There was no better reason ... honstly!

And thus began the Beta Interferon days, which lasted approximately 2 years. A few things that I later developed issues about:
1) keeping the serum at a constant pressure
2) keeping a sharps bin
3) extra traveling baggage because the serum was being kept and cooled in a lunch-box
4) the discomfort experienced in injecting yourself
5) the discomfort of the actual serum, which is an acid and it is cold.
6) and a few other issues.

Unfortunately, Beta Interferon had very little, if any effect on me, as I had further episodes of paralysis. After a short wait, I was placed into the experimental treatment.

To cut the story short, Beta Interferon may work well for you, and if it does then use it.

Silent Mike

Headaches and brain pains

Apparently headaches are not associated with MS. Apparently the pig is the pinnacle of aerodynamics, and hence it does not require the use of wings in order to perform amazing feats of aerobatics.

I have had some of my most debilitating headaches during the last 4 years, and strangely enough these headaches are hardly worth mentioning when compared to my "brain pains". There is a marked difference between the two. Headaches are a dull pain by comparison. A headache, usually, is located either behind the eyes, one the frontal lobe, centrally in the head, along the temples or down the back of your head towards your spine. A headache is either continuous or throbbing, but persistent and usually lasts for a few hours. Headaches can make you feel tired, queasy, stiff, and so on. Everyone has experienced a headache in some form.

The "brain pain" is a different beast entirely, and no ... it is not a migraine. In terms of sheer pain value, it is more painful than a regular headache by a factor of at least 10. It arrives suddenly, without the subtle warning normally associated with regular headaches. My "brain pains" have become more regular and more aggressive. The word "stroke" is quite possibly popping in and out of your head at this moment, and I thought so too at first, however, my GP and specialists are now convinced that this is not an option.

The "brain pain" feels like an extremely hot poker inserted into the spine and then rapidly hammered upwards until the tip erupts out the top of your head. Unfortunately,this is not the end. During the onset of some of these, I have lost either balance or strength out remain standing. These effects do not last long, usually about 10-15 seconds, but the pain persists - occasionally for a few days - and gradually disappears. Headaches can be treated with pills and these are generally effective, however, nothing seems to work with the "brain pains". During a particular desperate episode, I consumed enough Nurofen tablets floor an elephant (approximately 4 times the maximum dose during a 24 hour period). I have tried other tablets - which I am convinced were designed to be inserted rectally into a rhinoceros using a high powered and large caliber rifle - issued by the specialists and still had no relief.

I am convinced that these "brain pains" are responsible for the areas of scarring detected on the MRI scans of my head. Altruistically, I hope one else is being subjected to "brain pains", realistically, I suspect other MS sufferers are experiencing them, and gratefully would I receive confirmation that I am not alone in experiencing these.

Multiple Sclerosis Diagnosis

In 2001, I experienced a rather strange sensation which was odd at first and worrying very shortly afterwards. My arms were numb and I was unable to lift them or do anything of importance with them. In fact, breathing was rather laborious too. A visit to my GP resulted in a diagnosis for Repetitive Strain Injury which happened to be the buzz word of the year 2001. Having had no Medical background, and being male i.e.gullible, I took the diagnosis as the Gospel truth. After 2 weeks of this, which had its moments to be sure, the sensations and abilities of my arms returned back to normal. So obviously it was RSI because rest and recuperation had healed me.

One year later, almost to the day, I started losing sight in my right eye. Everything appeared blurred and turning towards white. This was unrelenting because the whiteness persisted even when I closed my eye. Sleep was virtually impossible, for three reasons in particular:
1) the ever increasing whiteness made it hard to slip into sleep
2) the eye was hurting in a peculiar manner, and
3) when I closed my eye interesting patterns were flashing across a white background, which given my natural intense curiosity kept me wide awake.

Off to the GP again. My GP is brilliant! I described the problem and he immediately booked me in to see someone in an eye clinic a few hours later. This person shunted me onto the department of Neurology at my local hospital. Soon afterwards, a few weeks later in fact, I was booked in for a lumbar puncture and an Magnetic Resonance Induction (MRI) Scan. After some more tests the diagnosis was delivered. I was not devastated or even mildly upset, perhaps because I finally had an explanation and therefore something to work with. Ignorance probably played a significant part in this. But I quickly educated myself and my life partner, and we decided to try and have offspring before I got to a stage where things may not work as biology had designed. A personal note to all males with MS ... you do not have to worry about this ... trust me! It does take longer to ejaculate, so beware .... you will not be done in 10 seconds ... in fact, you may want to set aside a fairly substantial (in male terms) amount of time ... about 30 minutes if you are lucky! But rest assured ... it does not go limp and you will not fire blanks. The strange thing is that my wife does not see MS as a bad thing at all. Anyhow, I digress ....

In 2003, about 3 months before the expected arrival of our first offspring, I was 2 weeks into what is now known as a relapse. The entire left side of my body was paralysed, medically known as Sinistrous Hemiplegia. The first time this happened was probably the most frightening because I didn't know whether this was permanent or not. My first thought was "Would I be able to hold my child?". After 5 weeks there was good and bad news though. The good news was that it was temporary, but the bad news was that the recovery was not complete. After this episode, and subsequent episodes, I noticed a weekening on the affected side of the body, and each subsequent relapse has taken a little more functionality away from me. I know this sounds horrible, but at least I got back functionality albeit in a diminished amount. It could be worse ... a whole lot worse in fact. Again I digress ....

After the first Hemiplegia, I was immediately started on treatment. Stay tuned ...