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.
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.
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:
• Fatigue – including heat sensitivity
• Other neurological symptoms – including vertigo, pins and needles, neuralgia and visual disturbances
• Continence problems – including bladder incontinence and constipation
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: