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.

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.