A Multiple Sclerosis Treatment

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Fancy a metallic taste and zero immunity, then this may be for you, but read further before deciding.

The Beta Interferon did not seem to be working. I say seem because it may have diminished the ferocity of the relapses I was experiencing, however, there was no way of being certain of this. One thing was clear ... I was still having relapses and occasionally speaking as though my mouth decided to fall asleep without informing the brain of its intention to do so.

It was decided that I should be given an experimental drug that appeared to have its uses for Multiple Sclerosis. After being told about the various risks I was going to run, I decided to proceed. The drug was called Campath 1H, and it had been used as a treatment for cancer sufferers. It was one of Campath 1
H's party tricks that proved most useful to sufferers of MS, namely the ability to destroy a subset of your immune system. Yes, this does sound drastic, however, a biology lesson is needed here.

Importantly, MS is not a disease! MS is a programming mistake. Your immune system is designed to ward off all forms of nasties that may wish to harm you. This protection is normally welcome, and tragic when it ceases to function (as in AIDS). With MS, the immune system has been engaged into the highest gear possible. So what this means is that not only will it attack all the nasties, but it will attack anything it perceives to be a nasty. In the case of MS, the perceived threat is the protein that forms a protective sheath around some of the nerves in your body. The sheath is usually called the myelin sheath, and it acts as an insulator to ensure that the electrical impulse traveling along the nerve reaches its destination. So ... remove the myelin and you diminish, if not remove, the function and effectiveness of the nerve. When these nerves cease to function in the usual manner, the sufferer will experience a flare-up or relapse. The mission Campath has is to destroy that part of the immune system responsible for this damage. Once this has been achieved, your body will naturally start building up your immune system, hopefully with a fresh set of instructions that do not include attacking your myelin. In this capacity, Campath is called an "immune modifying drug", however, Campath cannot repair the damage done to your myelin and thus can only hope to stop your MS in its tracks.

The way Campath was administered to me was as a daily intravenous drip. However, before the Campath IV drip was administered, a daily steroid IV drip was administered to "temper" the effects of the daily CampathIV drip. This is where you experience the euphoria of a disgusting metallic taste that sets up residence in your mouth, and refuses to vacate for around 2 weeks. Other than the taste, you experience nothing else while you are on the steroid drip. The very first Campath drip is another matter entirely. At first you feel a little fatigued and colder. After 4.5 hours, you are shaking vigourously to stay warm and to say that you are feeling unwell would be as understated as saying "the surface of the sun is a bit warm". At this point you are in real danger, and the nurses know this and prepare for it. The cold you experience is due to an incredible rise in your core body temperature. This is not only dangerous, but if left unattended ... fatal. The solution is to wrap you up in ice cold towels, while you are feeling cold already, and therefore bring down your core temperature. Unpleasant! You have no idea!

The same routine is performed for another 4 days. However, as the first treatment dessimated approximately 80% of your immune system, the effects of subsequent treatments during the following 4 days is hardly worth talking about. During these four days, a host of aches and pains appear, but paracetamol or ibuprofen can deal with these.

On the day that you are discharged, you are given the do's and dont's that you will have to adhere to if you wish to stay alive. Your diet wil take the biggest knock. Any food containing any kind of culture, i.e. soft cheese or yoghurt, and food that has not been cooked, i.e. by placing in a suitable lead-lined dish in the middle of the nearest nuclear bomb testing facility, should be avoided. The list goes on and on, and then starts addressing your social life by forcing solitary confinement for about 3 weeks. The reason they give you is that you have, at that point "an immunity to nothing ... and everything else should be avoided".

The important thing to mention here is that in my personal experience ... CAMPATH really did make a vast difference. I occasionally still have flare-ups and relapses, but I can deal with these ones ... and I have not had anything like the dibilitating hemiplegia that I experienced a few yers ago, which left me with about 90% of my prior muscle tone and abilities.

CAMPATH is the name I know this drug as, however, it was recently renamed as "Alemtuzumab" for whatever reason. If you click on the following link, you will be able to read more about it.
http://news.bbc.co.uk/1/hi/health/7680641.stm
What I have mentioned here is my personal experience with this treatment, and to give any sufferers who have not heard of it, an opportunity to decide whether they wish to try it or not.

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}

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