Now it all makes sense – unfortunately

It’s been four weeks since I had my MRI and my follow up appointment with my neurologist is first thing tomorrow morning.

I made it the earliest possible appointment time because I have a day full of meetings at work that I need to attend. In my mind I’m going in for a quick chat with Pierre to hear I have no issues and that you should get to a good Physio to sort out your problems.

So the night before, I remind Annette of my appointment and she’s quietly reassuring me that it’s not going to be bad news and we actually joke around with each saying what if it’s not good, you know a tumor or something. We weren’t really joking, it was our way of trying to play down what might be bad news coming. Something inside was telling me to get ready because this could go either way.

I’m a 37 year old man with a solid career ahead of me and a family unit that is growing up beautifully and overall life is great. I have a beautiful wife who is my rock, however I never thought that I would be putting her through this journey. She’s a special lady and all I can say is thank god she was with me at 8am on that Tuesday morning.

So we walk into Pierre’s office and take a seat waiting for him to greet us. I don’t think I’ve ever had small chat with my wife but there was plenty going on that morning. The wait is horrible, although it feels like an hour it’s been 5 minutes. Pierre walks out I introduce Annette and away we go.

The first thing I notice is the light box at his desk, which is showcasing the MRI scan of my brain in all its glory. Now I’m focused on this bloody light box. Either Pierre has the scans up to tell me I have a brain and all is good see you in the next life or… it’s like this Perry.

Pierre is a fantastic Neurologist with a great personality and is very genuine in his approach in getting to know us. I remember that I did very little talking, I left that to Annette and Pierre to sort out. My focus was very much on this light box. That damn light box!

Finally I join in the chat. The recap of my symptoms and issues have been done and dusted and we are finally addressing the dreaded light box.

So Pierre kicks off, Perry we have found some lesions on your brain and spine that have been causing you these issues. Ok, what does that mean Pierre? Well Perry it means that your exacerbations are caused by these white areas on your brain and spine, here, here, here and here. So now my body starts shaking and I can’t stop, in fact it’s getting worse.

Annette now has the courage to ask, ” so what you’re saying is that Perry has MS?” Pierre responds with “yes”.

Hang on you two what are you on about who’s got MS. Shit I have Ms. My memories are of a customer in the family fruit shop who had MS. He could hardly walk and just managed to get into his car and drive off. Is that going to be me. I ask Pierre what does my future look like, am I going to be wheel chair bound, will I end up in a nursing home, what about Annette will she be having to look after me every day and what about my life in general. My head was spinning.

Pierre assures me that treatment has come a long way and we can keep this thing at bay. I can commence treatment pretty much immediately, an injection every day. I’m handed brochures on treatment, the disease in general and what to expect next.

Pierre Halpern & myself in his office

I can’t control the shaking, my body won’t let me stop. I suppose I was in some form of shock and Annette realizes this and grabs my hand and try’s to settle me down. Eventually I stop and Pierre’s voice comes back into focus.

The consultation wraps up and it’s time to go away and digest the news. I can remember saying to Annette let’s get into the office. She’s like “honey I don’t think so, you need time to get your head around what you’ve just been told”. And with those words I begin crying. You see hearing this news is daunting and confronting.

Annette calls my dad the champion Dom lopez and asks if he’s home because Perry needs to see you.

I might leave it here and come back with the next chapter.

What is MS?

Multiple sclerosis (MS) is a condition of the central nervous system, interfering with nerve impulses within the brain, spinal cord and optic nerves. It is characterised by sclerosis a Greek word meaning scars. These scars occur within the central nervous system and depending on where they develop, manifest into various symptoms.

MS affects over 25,000 in Australia and more than two million diagnosed worldwide. Most people are diagnosed between the ages of 20-40, but it can affect younger and older people too. Roughly three times as many women have MS as men.

There is currently no known cure for MS however there are a number of treatment options available to help manage symptoms and slow progression of the disease.

Symptoms

MS symptoms are varied and unpredictable, depending on which part of the central nervous system is affected and to what degree. No two cases of MS are the same and symptoms, depending on where MS lesions develop on the brain and spinal cord, can manifest in many different ways.

The symptoms can be any combination of the five major health problems, including:

• Motor control – muscular spasms and problems with weakness, coordination, balance and functioning of the arms and legs

• Fatigue – including heat sensitivity

• Other neurological symptoms – including vertigo, pins and needles, neuralgia and visual disturbances

• Continence problems – including bladder incontinence and constipation

• Neuropsychological symptoms – including memory loss, depression and cognitive difficulties

Types of MS

It is generally very difficult to predict the course of MS. The condition varies greatly in each individual but most people with MS can expect 95% of the normal life expectancy.

Some studies have shown that people who have few attacks in the first several years after diagnosis; long intervals between attacks; complete recovery from attacks and attacks that are sensory in nature (i.e. numbness or tingling) tend to have better outcomes in the long run.

People who have early symptoms of tremor, difficulty in walking, or who have frequent attacks with incomplete recoveries tend to have a more progressive disease course.

MS tends to take one of three clinical courses each of which might be mild, moderate or severe:

1. Relapsing-remitting (RRMS)

Relapsing-remitting (RRMS) – characterised by partial or total recovery after attacks (also called exacerbations, relapses, or flares). The most common form of MS. 70 to 75% of people with MS initially begin with a relapsing-remitting course.

2. Secondary progressive (SPMS)

Secondary progressive (SPMS) – a relapsing-remitting course which later becomes steadily progressive. Attacks and partial recoveries may continue to occur. Of the 70-75% who start with relapsing-remitting disease, more than 50% will develop SPMS within 10 years; 90% within 25 years.

3. Primary progressive (PPMS)

Primary progressive (PPMS) – a progressive course from onset. Symptoms generally do not remit. 15% of people with MS are diagnosed with PPMS, although the diagnosis usually needs to be made after the fact, when the person has been living for a period of time with progressive disability but not acute attacks.

Clinically Isolated Syndrome (CIS) refers to a first episode of inflammatory demyelination in the central nervous system that could become MS if additional activity occurs.

The National MS Society in the USA have provided a table which outlines the three courses of MS along with charts that show what happens in MS over time:

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It’s hard to believe what’s next

I can remember back when I first started my MS journey thinking, actually let me start again.

I can remember back when I started having all of these weird things happening to me. The first thing was the two concrete blocks that were my feet that I would go to bed with every night. Was it my shoes? maybe, so I invest in some flash comfortable expensive shoes. Hang on my feet are worse. Okay why have I got pins and needles down the entire left hand side of my body and what’s this feeling of my skin burning like someone’s holding a blow torch to various parts of my body. It’s got to be coming from a nerve issue in my neck so off to the chiropractor I go. Crack goes my neck, back and whatever else he can get to and I’m thinking he’s cured me. My issues diminish over the next week and I’m cured.

Now did I tell you about the fatigue? No, well isn’t it a blast! It’s a Saturday afternoon and getting ready to do the lawns. I’ll start on the back first. I reckon I got a minute into it and the tiredness that I was felling all day has gotten worse to the point where I can’t continue and it’s off to the couch. But see it’s not like just feeling tired, you feel absolutely exhausted. An exhaustion I think that made me realize what “chronic fatigue syndrome would be like”, again it passes and I move on.

So I think! Back comes the pins and needles along with the other stuff. This goes on and off for months except new stuff starts creeping in. One night I’m out for a run with my wife Annette and mid run I can’t run. My right leg looses its strength and I’m struggling to lift it. Surely it’s my neck again but it can’t be just that. My leg gets better and life continues. 6 months on and Christmas arrives and out comes the totem tennis set that one of the kids has opened up. Here’s my chance to once again shine as the elite sportsman that I am except I can’t hit the ball, I’ve got double vision in my right eye. I put it down to a big Christmas Eve. My vision gets better over the next course of the week and I’m back good as Gold. But hang on I’m struggling to pee properly, it’s taking me ages to start peeing, now someone’s got to be having a lend. So that gets better and I think nothing of it except for the fact that the concrete blocks are back and now I can’t write properly, my right hand is going into slow motion mode.

So Annette goes enough now, let’s get you to a podiatrist and get these feet looked at because you aren’t getting better. She calls to make an appointment with my sister Rosina’s podiatrist and explains the symptoms. She responds with, “I don’t want to alarm you but I think your husbands issues a neurological”. I’m like what’s that crap, but I’m ordered to visit my local GP and he’s not sure what’s doing so it’s off to a referred neurologist for me.

A month later I’m visiting a neurologist called Jean Pierre Halpern. Good guy at first glance, pretty relaxed talking to me about my stuff. I think I can remember him saying that an MRI is probably going get to the bottom of all of this stuff cause we need to rule out, a brain tumor, a stroke, MS and any other disease. I can’t even remember him saying MS in fact I’m pretty much thinking it’s nothing too serious.

MRI machines are interesting creatures, loud, a tight squeeze and never ending. But an hour later and I’m done. Another milestone in the journey is done and dusted. It’s funny but I take it completely out of my mind because I’m sure there’s nothing wrong.

TBC

It’s time to talking

It’s an interesting journey, the talk journey. When someone asks how are you, we all reply good or going well and that’s probably right sometimes. However in actual fact the real answer is most likely one that would leave the person asking the question with very little to say.

When we talk about the nature of MS and what this can afflict onto oneself it’s a tough discussion. Tough because it’s easier to talk down than up as the definition of what’s really going on is Best understood in the neurologists room. That’s not to say that our family or close friends aren’t the go to people, it’s just saying that they aren’t the ones asking the questions all the time and that’s ok.

I have decided to start a real life MS blog, capturing the good the bad and the ugly that surrounds this disease. Plenty of good, some bad and some ugly. I’m hoping that my journey might mean something to someone facing challenges in life knowing that they can be overcome with real positive outcomes.

Yep we’ve all heard it before, but now it’s going to come without any sugar coating. Straight out of the horses mouth without anything other than what happens at the other end. Because it’s what happens at the other end that makes this worthwhile. Being the journeyman or is it journey-person isn’t going to cut it. That’s boring shit, getting to the end game in one piece with plenty of cuts and bruises that’s the real story.

So sit back and enjoy or don’t I suppose that’s going to be my job to keep you focused.

Here comes the talk!