The Saga Continues - Part III

The Saga Continues - Part III

Symptoms:

Some of my main symptoms include the following.

Fatigue

Fatigue is probably the most common symptom of Multiple Sclerosis and the majority of people with MS experience it at some point in their disease course, often chronically and for the entire course of the disease.

Fatigue in Multiple Sclerosis can take two forms: mental and physical.

Mental fatigue usually follows a daily pattern and, in this respect, differs from the constant fatigue associated with depression. Many people with MS report that they feel fine during the first few hours of the day but, by afternoon or early evening, feel completely exhausted. Often a nap or a short period of rest will help them recover.

Mental fatigue can vary between mild and severely disabling and is usually exacerbated by exercise, increased bodily or ambient temperature

Physical fatigue can be easily induced in MS by a short walk or other physical activity. For some reason, also not fully understood, the efficiency of demyelinated nerves deteriorates very rapidly with use. Almost everyone whose physical functioning has been disturbed through MS finds that their ability to do things reduces as they do them.

Mental fatigue is often associated with physical fatigue and all you want to do after physical exercise is to collapse on a bed and sleep.

What this means is that some days I can wake up and be fine and be great all day. Some days I can wake up and be fine, and then in the afternoon crash, these types of days I go and have a little "nana nap" in the afternoon. The some days I can wake up go have a shower and get dressed and be flat for the rest of the day.

The fatigue is a big one for me; it’s really hard to describe to someone without MS how draining it can be. One moment I can be fine then the next totally drained, like I’ve had the battery ripped out of me.

Mobility and Leg Issues:

My right leg is a little stupid is the best way to describe it. It doesn't always do as it's told by my brain. Also my knees go funny if I move fast on them. It's like the little signal that says "Lock knee" when running/jogging is shut off, so my knees give way when running pressure is applied.

My legs also can get stiff when I have been sitting or inactive for a while. So generally I get up and stretch them after a thirty minutes or so, and if I have been sitting for a while, when I stand I stretch and flex them before moving off (yes learnt to do this the hard way, e.g. not doing it equals falling flat on face)

I also get the odd spastic spasm every now and then.

So I have a walking stick/cane that I use when I go out, this is also a symbol that there is an issue. This came about when I was first diagnosed and I was in town waiting to cross at the lights. Well the little man went green so I placed one foot on the road, and then the other, and then one foot didn't want to do what it was told and over I went. This was in the middle of the day, and I had about fifteen to twenty people go past me lying on the road as I tried to get up, hauling myself up the traffic light pole, ad only one person stopped to see if I needed a hand.

I think the others thought I was a drunk. So I got “Mr. Stick” :) But sometimes my balance can go so it's handy…
I want a nice carbon fibre one or one like Dr House's

Circulation:

The other thing I get is a circulation issue in my feet and calves; this comes again when I am stationary and/or sitting. My feet swell up, so they look like ogre feet or as I like to call them "Shrek feet"… So if I raise my feet above my heart for about an hour the swelling subsides. But I have seen this cool machine called "The Circulation Booster" that looks like a set of scales, but is designed to send electrical impulses thru your feet to add in promoting circulation, will have to save up for it.

Pebble Feet:

The other annoying thing is what I called "pebble feet". The best way to describe this if you stand on a clean floor in bare feet and you drop a really, really, really small pebble or grain of salt/sand on the floor and then stand on it. Well the pebble you feel I get at random times on either feet in different locations of the sole of my feet.

Hot Spots:

One I don't have any more is this sensation I use to have in my right ankle. It was like one of those "sports heat liniment type rubs" that athletes use. But instead of the heat radiating from the skin in, the warmth radiated from within the ankle bone out. While not painful it was uncomfortable at times. But it disappeared.

I also get a weird little thing happen to me on the odd occasion.

L'Hermitte's Sign

L'Hermitte's sign describes electrical buzzing sensations in the limbs and body brought on by movement of the neck. These sensations are known as Paraesthesia and include tingling, buzzing, electrical shocks, partial numbness and sharp pains. L'Hermitte's is most often triggered by lowering the head so that the chin touches the chest. The sensations usually only last for a second or two. It has been called the "barber shop" symptom because it is often evoked when the hairdresser asks you to lower your head when he or she shaves the back of your neck.

L'Hermitte's is associated with a number of conditions including arthritis, cervical spondylosis, disc compression, pernicious anaemia, tumours and Multiple Sclerosis. In many cases, the cause cannot be found.

Because the cervical spinal cord is a frequent target for Multiple Sclerosis it is a very common symptom of MS. Aproximately two thirds of people with Multiple Sclerosis experience L'Hermitte's symptom at some point during the course of their disease.

In MS, L'Hermitte's is an indicator of lesions in the cervical spine (the part of spine in the neck). Movement of the neck causes the damaged nerves (the demyelinated neurons) to be stretched and send erroneous signals. The symptoms can occur anywhere below the neck and many people with MS find that it moves around their body from one day to the next.

So the best way to describe this one is you know when you smack your elbow in that certain spot, and you get that little electrical jolt that goes up or down you arm. Well that that little electrical jolt s what L'Hermitte's feels like as it travels along my spine. But I have also had the sensation in my left leg. These can be weird as the happen at random times, and also the sensation can vary. Sometimes it can be unpleasant, sometimes a little painful and sometimes a little nice and erotic :) I haven't had a bad episode of L'Hermitte's for about seven/eight months.

Every now and then I got a brain fog… I go to do something and then can't remember what it was I was going to do, this mostly happens when I get really tired.

Also I can tell when I really, really tired, my right hands loses some strength and the ability to grip, this one I kind of noticed when I was writing one day.

Some people have tempeture issues

This brings me to the last dangerous symptom.

Emotional symptoms.

Emotional

Emotional symptoms are also common and are thought to be both the normal response to having a debilitating disease and the result of damage to specific areas of the central nervous system that generate and control emotions.

Clinical depression is the most common neuropsychiatric condition: lifetime depression prevalence rates of 40-50% and 12 month prevalence rates around 20% have been typically reported for samples of people with MS; these figures are considerably higher than those for the general population or for people with other chronic illnesses. Many brain-imaging studies have tried to relate depression to lesions in different brain regions with variable success. On balance the evidence seems to favour an association with neuropathology in the left anterior temporal/parietal regions.

Other feelings such as anger, anxiety, frustration, and hopelessness also appear frequently, and suicide is a very real threat since 15% of deaths in MS sufferers are due to this cause.

Taken from wiki

This is the most dangerous of the symptoms, because this one can kill. I was advised about the depression people can get from MS, the having to deal with it on a day to day basis. One of the support forums I go to someone stated that some people come to the understanding about the disease and its effect on them in about twelve months. The average is about two to three years, some never, these people are the ones who suicide.

For me I have my little moments, were I've had a little cry by myself and done the "why me" thing. But I have never cried in front of anyone not even my mother. I look at it as everyone has issues in their life and they don't really want to hear about mine.

Trust this one is true as I have had a few friends since they found out I've hardly heard from them.

I do try and keep in a happy mood as much as possible. Sometimes my jokes can be a little self deprecating and sarcastic and I get funny looks from people, but if I can't take the piss out of myself then I have no hope.

Some people with MS cam also have issues with temperature as in hot weather can make their symptoms worse. Some require wear cooling vests etc. While I don’t think I have this the heat does sometimes affect me.

I have a couple of other symptoms, but I won’t go into them as they are a little private.

A overall list of symptoms can be found here Multiple sclerosis signs and symptoms  

Medication

Betaferon (also called Betaseron) (Interferon-1b)

Is a drug in the interferon family used to treat Multiple Sclerosis. It is administered by sub-cutaneous injection and has been shown to slow the advance of the affliction as well as reduce the frequency of attacks. Betaseron is manufactured by Berlex Corporation.

It is believed that Interferon-Beta based drugs achieve their beneficial effect on MS progress via their anti-inflammatory properties. Studies have also determined that Interferon-Beta improves the integrity of the blood-brain barrier (BBB)—which generally breaks down in MS patients, allowing increasing amounts of undesirable substances to reach the brain. This strengthening of the BBB may be a contributing factor to Interferon-Beta's beneficial effects. These studies were carried out in vitro (outside a living organism - a "petri dish" experiment), so it does not necessarily mean it works the same in people.

Closely related is Interferon beta-1a, also indicated for Multiple Sclerosis, and with a very similar drug profile.

Betaferon/Betaseron costs approximately US$1300 for 0.3 mg solution, or equivalent to 15 vials.

Reference: WikiPedia

The easiest way to describe what this drug does is it's like a "flu shot", designed to slow down the frequencies of attacks/relapses, and if an attack/relapse happens to minimise the exacerbations of the attack.

The pharmaceutical company here has a “Compassionate Program” whereby they give the medication to me for nothing at present. Once I “officially” have MS I go on the Pharmaceutical Benefits Scheme (PBS) to get the medication.

 

So I get to give myself a shot in the fatty tissue of my body (there is quite a lot) every second day.

So that’s some of the things I deal with.






More to come.