My Major MS Flare Up - The Full Version

OK for those of you the don't know I have Multiple sclerosis or MS. I sometimes whinge & rant about my symptoms & how I'm feeling in my Twitter feed, with the hashtag of #MSSucks

How I got it and what my major & minor symptoms are can be found here http://angtgaid.blogspot.com/ so if you want to read about the begin of the saga your quiet welcome.

So anyway since around the begining of October I noticed an increase in the intensity of some of my symptoms. Us MSers call then Attacks, Flare Ups or Exacerbation being male I shrugged it of as part of dealing with MS. As the month went the symptoms got a little worse slowly. I didn't rush to the Doctor/Neruo over them as I had a yearly review coming up in December.

So we cut to the 7am on the Friday (the 3rd of December) when I woke with the need to use the bathroom. I swung my feet to the floor used my stick to stablise my self amd pushed up. Then the fun started. My knees gave way not supporting my body weight and I sunk to the floor (think like a marionette puppet collapsing with no strings to support it)

Then I feel forward my face ending up is a bucket near the bed that I had thrown some clothes over. Smothering me. Thoughts racing thru my head of people finding smother to death in a pile of clothes. All I could think was Horatio Cane investigating my death and working out is was "accidental" and adding a witty one liner "Case Clothed" sliding on his sunglasses and The Who opening rift firing up ;)

So rolled out of the clothes and ended up on my back struggling a little like a landed fish, a little out of breath. Not really knowing what to do (as I live alone) So after attempting to pull myself up a couple of times with no success (yes I had a little cry as its very frustration) I laid back down to catch breath.

Not sure what to do I decided to call my mother (my parents are major support/help). So a little tear I called them and explained. I knew they would really be able to help much I'm around 120kg at them moment and my parents are on the smallish side (5'3") and my mother is still recovering from major surgery.

So they said they would come over anyway. So I laid there a little longer thinking what I should do. Never really discussed with my Neuro or the MS Society (I'm a member) about an Emergency Exacerbation Action Plan.

One thing was worrying me was I knew I would be going for a ride in an ambulance if I I had paid up my membership. I was positive I had paid it, but paid it late.

So that was going to be my first call. The next was a call to my Neuro, then the next a call to the MS Society. So my parents arrived (mother has a key) Dad came as well (was grumpy) and said I hope I did expect them to left me. I said I knew and that! So I went thru who I was going to call etc. I ask Mum to find my wallet to get Ambo card and land line phone & some water as I was parched.

OK people a little bit of advice. I don't have home insurance, health insurance etc BUT I do have Ambo cover and I high recommend you get it http://www.saambulance.com.au/publicweb/products-amb.html#rates As I'm a on a disability its a cheap yearly insurance for me. All you need to do is look at the "Transport Rates" for if you are not covered http://www.saambulance.com.au/publicweb/products-ambTransport.html :)

So I laid there for a bit, was able to sit myself up and move my legs around with my arms. Called my Neuro to find out if he started early but got voice mail saying business hours started at 9am.

So I settled in to wait, while my parents pottered around and did some cleaning up which was appreciated.So it hit 9am (at which point I had been on the floor for 2hours) and called the Ambo service. Found out yes I had paid up, so one hurdle down. Next was the Neuro. Explained to the receptionist what the issue was and if I could speak to Doctor, Sarah the head receptionist took over the call (she is better informed with the patients) explained to hear & she spoke to Dr Robinson who then came on the line, who said yes I should call Ambulance and see if they would bring me to the QEH (he consults at hospital which is across from his practice).

So called 000 (first time in life I have called 000) and explained my situation. They took details and said a crew was being dispatched. Phone call two down. So next I called MS Society and asked to speak to MS Nurse. Was put thru to Helen & explained the mornings events so far what was happening and  what I should do thru them once I was at hospital and the follow up from them. I wasn't long on the phone when the Ambo crew arrived and they did an easement of me to see if I was injured from the fall etc while I explained how it happened etc.

I was impressed by the crew Tim (I think he was the team leader) he was cool, funny and helpful. So we work out a plan of attack to get me up involving a firm chair for me to support myself on to push, the ambos "green chair" and a belt around me for Tim to use as leverage to pull on me.

So we got everything into position I used the chair to get myself onto my knees they got the green chair behind me. SO with a push up from me and a backwards yank from time I was on the green chair. Took a little breather as it took a little bit out of me. Then they reassessed me. As they were an emergency crew they would take me to the RAH I advised that my Neuro consulted at the QEH so Tim suggested we call my Neuro and see what options were available.

After talking to my Neuro he said I was really an "emergency" (life threatening) case, and Dr Robinson organised wit the Neuro registrar for an admit to the Neuro ward at the QEH. Then Tim orgaised a "Transport" for me, the earliest available was 11:30am. Once this was done the organised to slide me across to my PC chair for me to sit in for the wait, finished off some paper work for the transport crew and departed.

With help from Mum orgainsed a bag of small bag of essentials (phone, medicare & concession card etc) then moved to be in front of the PC as well & discovered the base station from my phone was out, along with my Digital Set Top Box and more importantly my MODEM!!!!

So after my father exploring what the issue was I worked out it was where the power board was plug into the wall the switched was knocked off. Power restored modem rebooted INTERWEBZ BACK YEAH.!

As this happened I had not realised that as my butt was a little numb and the seat of my chair tilts a little bit back and forward. The chair had tilted forward and I had slide closer to the edge of chair with out realising it.

Then BANG!!! WTF I was on the floor again!!!

Few swear words flew, and a laugh at how I could be in the same problem I was in a less than 30-45 minutes before hand.

My parents looked at me. I said I was OK and they could leave (as they had a few things to do that day) and I would be OK for the 45-60 minutes I had to wait for the ambo transport crew to arrive.

Well this is around when I started to tweet and the mornings events and the #TweetsFromTheFloor hashtag was born :)
Some of my followers started to respond with support and best wishes which was really nice. So I gave a report (abbreviated for 140 characters) about the mornings events with my normal self deprecating sarcastic gallows humour :)

If you want to you can troll back thru my Twitter time line to read them http://twitter.com/BrentonHorsell

So I was going to hospital!!! The crappy thing would mean NO INTERWEBZ!!! I mentioned something about I really needed to a laptop & a MiFi for times like this! a couple @ me’s later @atriad posted to me did I know how to use an eeePC netbook & @internode WiFI USB dongle?

I responded that yeah I did, & he said he would arrange once I was in the ward to drop in and lend me his eeePC & Internode dongle.

I thanked him for his generosity & exchanged mobile numbers so I could text him location etc.
As the day wore on more people posted support which was nice. Then I realised that it was 12:30!!! So I recalled 000 to see what was happen and the nice operator found my details confirmed I was booked for transport but that they were a little busy and that transports were secondary to emergencies and I would be transport at the earliest available time.

I had informed her I was back on the floor but not injured. She said if there was a need to call back & also gave me the general non-emergency number as well. So I settle back on the floor, keyboard dangling over the edge of the table tweeting away.

So at around 2:00pm the transport guys arrive and explain they can’t bring stretcher in so going to have to “green chair” me out to it. So got my wire firm chair brought in so I move myself on to my knees got on to my little single seater red sofa with a little huffy and puffing. Had a rest then got my arse on the the green ambo chair.

So buckled me in, grabbed my bag of goodies and slowly wheeled me out. Did realise it so warm until I got outside in the sun. The ambos locked my house and I began my first ambulance trip in my life time.

It was a little boring they took some obs as we traveled ask some questions re my illness talked about them. So soon I arrived at the QEH the ambos wheeled me to admission processed the paper work and took me to the ED to wait for a little bit for an Orderly to take me to the Neuro ward.

Arrived at the Neuro ward and assigned my bed and was transferred in to it. Slowly staff come and assessed me. Thirty minutes after I arrived Dr Robinson showed up and did his consult re my episode and was a little pissed that I had stopped my meds (Betaferon - long story as to why). He prescribed a 3 day course of IV Methylprednisolone (a steroid) and booked an MRI for me (I hate those things).

So once along in the hospital bed I got to have a “Homer Simpson” moment “Bed goes up, bed goes down”

Then dinner arrived :) I ate and then not long after another Doctor came around to insert a IV Jelco (the little plug thing they push the IV needle into). He had issues with my right arm getting the Jelco plastic shaft into the vein (arm looks like a junkies at the moment). So he switched to the left arm and had issues for a little bit until he finally got it I!!!

So I got rested for a little while before another Doctor came to insert a catheter. That's a little like going thru a TSA check point and getting you junk felt up ;) Hahahaha!!! They use the wrong gauge to start with and had to redo it with a lager gauge. So then I moved to the chair next to my bed and my first IV was administered. I sat there for a while and dozed. Then a little later my parents visited for about 30 plus minutes got updated on the current situation and what was going to happen.

So after they left I was bored so played some Solitaire on my phone, sent a couple SMS when I could get a signal, and played some more Solitaire. Dozed a little bit more. Then asked to go to the day room to watch some TV. On the way got KitKat & bag on Snakes.

So watched late night Michael Caine movie the after it finished head back to my room and bed. Next I was woken up with morning obs & meds round at 8am and breakfast in bed. So ate breakfast read the paper which took up most of the morning. Net thing I knew was it was lunch time. So ate lunch had Blood Pressure & Blood Sugar levels done. Played a little Solitaire and had a little Nana Nap in the chair. Then my first surprise visit from @atriad and @ omegatron (aka Tim and Andrew) which was a nice visit and they brought gifts. The EeePC and @internode WiFi USB Dongle. So after a nice visit the did a quick run thru of how to connect etc. I am very grateful for the guys doing it for me just shows how good hearted people are. You get two thumbs up in my “Good Guys Book” Tim and Andrew :)

So grab my USB drive with some apps I use like KeePass (stores all my usernames/passwords) quick install of that. Then install of Trillian. So was able to log into Twitter, Facebook & my IM accounts :)

So took me a bit to catch up with all @ me’s with people wishing me well, support and speedy recovery which made me feel good guys and was appreciated greatly. So next was dinner and then a visit from parents again. More Tweeting, catching up with people via IM and then started to watch one of the movies that was on portable hard drive that the guys included in my “Tech Care Package”.

First for my viewing pleasure Iron Man 2 so in between IM messages and Twitter @ me’s I enjoyed the action romp. So I spent the night doing that. As it got later I still couldn’t sleep and my room mate was having an up and down night as well (plus has mild memory issues) so issues remembering the Nurse Call Button/TV Remote Functions. So he added to me nt wanting to sleep. So started to watch Sherlock Holmes (with Robert Downey) Once it hit around 4am I was a little tired so decide that I should sleep, but need potty as soon as I had laid down /facepalm.

Once in the bathroom also decide I wanted a shower as I had not had one for a week as I have a high walled bath at home and didn’t want to try and climb over the edge and risk a fall.

So had a nice long shower then hoped in to bed and feel asleep.

Next was Sunday morning obs and meds round and breakfast. Today's meals I actually got to choose the day before.

Not long after that got a visit from the duty doctor who did obs and Q and A about how I’m feeling etc. Also found out that my MRI doesn’t have a time scheduled yet so hopefully it will be in morning. But will advise as to what time it will be so those people who may want to visit will know if I will be awake (getting fully knocked out for MRI :) Yeah I’m a big wuss, but MRIs aren’t like on the medical dramas!!!) So also found out most likely will be in here until Wednesday at the best case worse case a little longer. Will depend on the MRI scan and how the steroids course is helping me as to the next  step.

So I started writing this at around 10am and before I knew it was midday an d lunch time so as you can see I’m getting three square meals a day :) (while they are ot the greatest meals I have had they are neither the worse, and its nice not have to cook for yourself :) )

Not long after I got my first visitor of the day the lovely @Nattersmuch (aka Nat) who popped to see how I was and brought me some mags :) After consulting with her hubby who advised computers and boobs ;) Good one David :)
Then a little while @Jaseoz (aka Jason) dropped by and said for a bit and shoot the breeze with me. About 60 seconds after Jase left my parents dropped by. They must have passed each other in the hall way :)

So guys thanks for dropping in and having a chat, much appreciated. Weird that my Tweeter friends have been more supportive than some of my long-term real life friends!!!

So anyway my parents left as my dinner arrived which I just finished a little bit ago which now leaves me a little time to finish this off, spell check it, proof it and post.

So if you have any questions etc feel ask on twitter, email or IM etc.

If you want to chat fire of a request for my IM usernames (MSN/YIM/G-Talk/Skype etc)

Once again I would like to thank Tim and Andy for the “Tech Support Care Package” really appreciate it guys. To those that have dropped by, and to all those people who have sent my @ support messages and well wishes


Cheers guys

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