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.

The Saga Continues - Part II

The Saga Part II 

So the saga continues

With my MRI done, my next appointment with my Neurologist had been made for a week after for him to review the scans. So the appointment comes around, and he say that something has been discover in my neck.

He says it is an inflammation of my spinal cord in the C3-C4 region of my vertebrae. He said it could just be a virus that may have caused it and prescribes a course of Prednisone (type of steroid). He said that this type of inflammation takes time to develop and also subside. So off I went home and began the course of medication. Well one of the side effects mentioned in the little pamphlet you get was "increased hunger". That was a mild understatement… I was having to have about eight meals a day, and I'm not talking little snacks. I'm talking full meals.

So for the week and a bit I was taken the Prednisone I spent it in the kitchen. Make meal, eat meal, clean up, get hungry again, make meal, rinse and repeat for the duration.

So about two weeks later I went back to my Neurologist, and he advised it could be a couple of things after reviewing my case, one of which was Multiple sclerosis. He said that there was a screening test I could have that my point towards helping make a diagnosis. There is no one test you can get that says you have MS (Multiple sclerosis).

So he tells me what the test is, and that it requires a Lumbar Puncture (Spinal Tap) to draw spinal fluid and runs some test looking for oligoclonal bands. If it's not there then it's not MS (Multiple sclerosis), if it is then it's another marker in the diagnosis.

So I get booked in for the Lumbar Puncture (Spinal Tap) the following week. So I arrive at appointment (it's day surgery) and get taken up to the ward. I lie around in the bed for about an hour until they are ready for me. 

Then the fun begins. 

So they prep me and tell me what they are going to do. If you are not sure what a Lumbar Puncture is, they take a needle and stick in between your vertebrae and into your spinal column and drain some spinal fluid. 

So they jab me with a local and get me in to a position that curves my spine (I was lying on my side tucked up in a ball). So first attempt, can't get it thru the gap. So they try a second attempt, same thing. So a third attempt is made. By this time the local is starting to wear off, and he hits bone. 

Bugger me, did that hurt!!!

So they call for the registrar, turns out I had an intern attempting the procedure…

So I have a new rule when I go to hospitals now… 

NO trainees…

So after about an hour, the registrar shows up (he had to be paged). He changes my position. I am now sitting on the edge of the bed leaning across one of those side table they bring you have in hospital for food etc. he applies another local, and I sit there. 

After about three to four minutes I don't feel a thing, so I ask if he is going to stick it in me. His response was "It's been in for about a minute, and we are nearly finished…" Well bugger me, I didn't feel a thing. 

Reason for my No trainee rule ;)

So they drain what they need and send it off for testing. I go back to the ward for recovery. I had to spend the afternoon on my back, under observation. So I get a meal (I have found it's hard to eat soup on your side), have a little nap, watch some daytime TV, after watching me all day and testing for various response the nice nurses allowed me to go home around six in the evening. Had a mild headache for the next few days, so took it easy.

About a week later I had a follow up appointment with my Neurologist to review the results of the test. So this is where he tells me that the test is positive and they found the protein marker, which is another marker for MS (Multiple sclerosis). 

So he tells me that the diagnosis is ninety five percent MS (Multiple sclerosis), because by definition to have MS (Multiple sclerosis) you need to have multiple attacks when a certain time frame. But he says with all the other symptoms displayed he is sure of the diagnosis.

The reason it is so hard to diagnosis generally is because it has a list of symptoms from like A to Z. The problem is one person may have symptoms B, C, D, K, J and L which come on strong. While another person may only have symptoms X, P and Q which are light.

So he diagnosed "Relapsing Remitting MS" or "RRMS". This type of MS (Multiple sclerosis) is when attacks come and go. This can be exacerbations of current symptoms (meaning the current symptoms get worse) or new symptoms.

It was a little hard to take in.

Multiple sclerosis

Wow…

The only thing I had to do with MS was when I was younger and I read books for the MS Readathon, and The President from The West Wing had it

Now I was being told I had the disease. It’s not every day you are told you have an incurable disease!

So what does it all mean…

Well basically my body's immune system is attacking me, and in particular the lining that coats my nerves (Myelin). So basically it boils down to, I'm like a house with bad wiring, and the electrician doesn't know what's caused the bad wiring, and doesn't know how to fix it.

So the signal from my brain gets sent, but doesn't always get where its suppose to.

Some other points

No one knows what causes MS, whether it's genetic or environmental.

At present there is no known cure. But there is a lot of research going on. Now that retarded redneck of a president (George W) has left office, I know that Bazz Obama has rescinded bans placed on stem cell research. So hopefully this will bring new avenues for a possible cure.

There have been some promising research already - MS stem-cell treatment  

I forgot to put any dates in because I could remember them exactly, but the diagnosis process took several months from January 2007 through to April/May 2007 when I was given the firm diagnosis

In Part III I will describe some of my symptoms in detail and the treatments

The Saga Begins - Part I

A long time ago, in a galaxy far, far away…

Wait wrong saga ;)

As they say things happen in threes

OK it all started around the end September 2006. I was retrenched from my job of 3 years (Help Desk at local ISP, it wasn't missed), that’s one. The following day my landlord told me she was not renewing my lease the following month, so that was two.

So I had to sign up to Social Security (Unemployment Benefits) and hunt for new place to live. Found a new place around mid December (land lord was nice enough to give me some extra time).

Then I had to attend "Job Search Training" as part of the requirement to receive Unemployment benefits. While attending the JST sessions I began to notice a few strange things happen.

First off I began having issues with my legs, this involved not being able to run, I could only do a quick shuffle. Climbing stairs became an issue as well; I had to do the "one stair at a time" climb. I really didn't think much about it at the time, and thought "I will make an appointment to see the Doctor" in the New Year (typical male :) )

In the process of the JST I sent quite a few CV's and ended up getting some hours in an old industry I use to work in (Hospitality). I began to notice more things, one was I was becoming really tired. I just thought it was because I was a little unfit, and use to a "sit on my arse" type job, not an active type one.

So while I was doing this job I was still fielding response to all the CV's I'd sent out. One day while I was in the shower I heard the home phone ring (main contact point as didn't have mobile/cell phone at time). So I bolted out the shower and sprinted naked up the hallway (flat-mate wasn't home). Halfway down the hallway my right knee gave out, and I went crashing face first into the carpet.

With all of these weird things happening I decide to make an appointment to see my family Doctor. So off I toddled, and gave him the list of symptoms I had the things that were happening. He scratched his head and was a little baffled. So he sent me off to get a CT-Scan of my lower lumber region as all of the major symptoms had been in my lower limbs.

The scans came back not showing anything of major significance. So he decided to book me into see a specialist (Neurologist). My Doctor finally found one that had an open appointment in six weeks time (earliest we could find). After the booking was made he said if anything "major" happens to get back in contact and he would see about getting the appointment moved up.

Cut to about a week and a half later. It was Friday, my normal shopping day. This would involve me catching the bus into town with my trolley and walking from the bus stop to the Adelaide Central Markets.

The bus stop closest to my house was about a five minute walk for a normal able bodied person to walk, but this Friday it took me fifteen minutes, and was pretty tired when I got to the bus stop. Bus came and got on and traveled in to the city. Got off in town (Currie Street) and began to walk to the Adelaide Central Markets. This walk is about a fifteen minute walk on average for normal person. Mine took me about thirty five minutes…

So by the time I got there I needed to sit down for a spell. Once I had rested for a bit I did my normal walk around and shop. After this I went to my favourite café Cibo on Gouger Street and had a couple of Long Blacks sitting out the front as it was a nice warm summers day and then decide to make the trip back…

Well… then it hit me and I couldn't really move. Not sure of what to do I called my mother and explained to her what had happened. She agreed to come and pick me up. She arrived and picked me up and we made a detour past my parents place. When my Dad saw me the first words out of his mouth were "You look like death warmed up" and suggested I go to the hospital. I poo poo'd the idea as I didn't feel like spending the weekend in hospital. I said I would call the Doctor on Monday. So Mum took me home and I went to bed and slept for about twelve to eighteen hours.

On Monday I called and the earliest appointment I could get was for the next day (Tuesday), so I took that. So saw my Doctor on Tuesday morning, and explained to him what had happened, he said I probably should have gone to hospital. Anyway he rang the Neurologist and explained the situation, and with luck there had been a cancellation the next day (Wednesday) in the morning. So we took that appointment.

So I go to the Neurologist the next morning, I list the array of symptoms I had been observing. He gets me to lie on the exam table of prods, pokes, bends and pulls me… After the exam he says there are some unusual responses, one of which was when he scratched the sole of my foot with a pointy object my toes went the wrong way.

So he decides I need an MRI (Magnetic Resonance Imaging), and he gives me the piece of paper with this to give to his receptionist. Out the front we wait while the receptionist rings and makes an appointment (he had marked urgent on my file). It turns out she knows the woman she's speaking to on the phone (something about being in her bridal party) and there was an opening that afternoon at five thirty.

So we take it. My Mum had a pervious appointment so we organize my Dad to give me a lift. As we had time to kill (Neurologist appoint was about eleven) my dad and I decided to have lunch in town to kill time.

So at the appointed time we head off to the scanning place. This was my first time getting a MRI. Let me tell you it's not like what they show on TV medical shows… First they don't give you a little pair of "Walk-man type headphones", no they give you industrial strength ear muffs...

Why???

Because it get extremely noisy in the MRI. Second they show these nice large machines on TV shows…

Wrong…

The tube is actually quite narrow. So I discovered I have a mild case of claustrophobia. So after a lot of deep breathing and a blind fold they finally got me in there.

It was going to take forty minutes to do from the top of my head to the base of my spine. So I asked if they could do my head, and give me a breather, and then my spine. They agreed.

So they stuck me in the tube all blindfolded up and started the scan. Well its bloody noisy in there when the thing gets all fired up, and you get the odd weird feeling (vibration through the body) when they change the polarity to scan a different way.

So after about twenty minutes they finished my head and yanked me out for a breather and a glass of water. Then it was back in for my spine, which took another twenty minutes. By the end after a little of deep breathing I was somewhat semi relaxed and the last five to ten minute flew by.

All in all, it was not a fun thing.

Part II will continue the Saga