I don’t hide away from the fact that I have a disease called Multiple Sclerosis – commonly referred to as MS.
There seems to be a lot of ignorance around this disease – and that’s to be expected. It’s not an infectious disease like the flu and the vast majority of people with MS experience it quietly and without obvious problems. Many in the Medical Industry refer to it as "the silent disease". It’s not contagious and because the symptoms primarily occur internally, you would not be able to pick the vast majority of people with it.
The symptoms vary enormously – from person to person and day to day. Some suffer short term memory loss or an inability to find the correct word when they’re speaking. Others can suffer balance problems, bladder control issues or double vision. Or any combination of these and many,many other symptoms. Every part of the human body (& mind) is controlled by the brain and central nervous system. So you can imagine, if they’re not working properly – you’re not working properly.
Multiple Sclerosis means "Many Scars". This scarring refers to the tissue that grows to replace the fatty myelin sheath coating the nerves in your brain and spinal cord. Why do scars occur? Because for some currently unknown reason, the body’s own immune system is attacking it. When the myelin sheath gets damaged, scar tissue grows to replace it and this affects the nerve’s ability to carry a signal properly. Damage enough nerves and you start to experience problems. Unfortunately, the myelin sheath does not grow back and there’s only so many nerves and only a finite amount of brain tissue.
Wikipedia covers this really well here: http://en.wikipedia.org/wiki/Multiple_sclerosis
I was first diagnosed with MS in 2004. I had experienced a number of unusual physical events that lead me to do some research on the Internet. After much filtering of information, I established I either had a brain tumour or multiple sclerosis. My GP was no help whatsoever and basically accused me of being a hypochondriac and malingerer. The curse of the silent disease! Because the symptoms weren’t overt – he couldn’t make the mental leap.
The last time I went to see my GP, my feet were burning, I was slurring my speech, had short-term memory loss and I’d had a double-vision episode that had lasted about an hour. I was seriously worried but he seemed to think "it’ll pass". It didn’t and looking back I’m happy I insisted on a referral to a Neurologist. The snotty tone of the referral making it clear the patient had "self-diagnosed MS" made me rather angry.
The Neurologist had clearly seen many cases of MS as he was able to establish within 5 minutes of probing questions that there was something wrong. I was sent for an MRI and within a week I was back in his office to hear the verdict. I not only had MS, I had had it for quite some time.
It was a massive relief when I found out it was "just" an auto-immune disease. A tumour may have given me months to live whereas MS won’t shorten my life, it’ll just affect the quality of it.
With the wondrous 20/20 Retrospectoscope, it’s easy to pick medical events in my life from as early as the age of 21 that can now be explained by Multiple Sclerosis. That time the Doctor claimed I had a double-ear infection that affected my balance? MS. The unusual drop-foot way of walking that used to occur on the odd occasion… MS. The weird feeling of a belt being tightened around my chest? MS. And finally – the sign that gave it all away… the bizarre electrical buzzing I get in my feet when I drop my chin to my chest… that’s called Lhermitte’s Sign and it’s an almost 100% indicator of Multiple Sclerosis.
So, now we have a diagnosis. What’s next?
Well I’ve never been a big fan of taking medicines, so I encouraged the Neurologist to just let things ride until my next attack. My MS is a type called "Relapsing-Remitting". That means I can be fine for weeks or even months and then something sets it off. Usually a stress event, but often things like excess heat or being run-down can get the symptoms or "exacerbation" happening.
Usually I’ll have my exacerbation and then things return mostly to normal. Damage has been done, but the brain and central nervous system are wonderfully engineered technology and there’s plenty of excess capacity to take up the slack and re-route around the damaged areas.
Unfortunately, about 2 years ago, the episode started to pick up pace and ferociousness. The Neurologist jumped on it and put me on an immuno-suppressive injectable called Betaferon. This needed to be mixed from a powder and saline solution every other day and injected into my belly. I coped with this for 9 months and it actually did a great job of suppressing my symptoms. I used a auto-stabbing device called an Autoject. You load the syringe into it and press a button which releases a spring that sinks the needle into your flesh and presses the plunger for you. Horrible 8-\
I was tired of injecting into my tummy.
I returned to the Neurologist and was moved onto another immuno-suppresive called Avonex. It’s still injected, but it’s now once a week. That’s bearable – especially knowing that since I’ve been on these 2 medications, I haven’t had a serious set back at all. I’d like to thank all Australians for allowing these medications to be on the Pharmaceutical Benefits Scheme – because if they weren’t, there’s just no way I – or any other MS Patient – would be able to afford them. They cost many hundreds of dollars per injection.
It still does my head in to think my MS is caused by my body’s own over-active immune system – and that the thing that’s saving me is a substance that effectively reduces how capable my immune system is!
So these days, I’m down to minor symptoms but they can still be reasonably debilitating. I get rotten headaches – and they’re a very specific type that are quite unlike normal headaches. Normal painkillers don’t do very much at all. I’m clumsy and I suspect that’s because I have poor balance. I often bounce off doors and walls. A Type-A Personality with no coordination is not a good recipe! I have burning feet – or maybe feet that feel like they’re in really cold water – it’s just a constant, never-ending tingle from halfway down my calves to the ends of my toes.
But I’m happy. I’m happy I’m on treatment. I’m happy it’s not rapidly getting worse. I’m happy it’s not a tumour. I’m happy I’ve made it to 38 and I’m still completely functional and although a little tubby – I’m as fit as a Mallee Bull.
I’m going to use my blog to document my ongoing treatment, my symptoms and how I deal with it all. I’m probably going to reveal far more information than I really should – but that’s me. If this helps anyone at all, I’ll be over the moon.
Other than PCGURU, I work in radio. It’s something I absolutely love. Whilst I don’t mention MS very often on air, I want to use that platform to help others deal with the concept of having MS and I want people to know you can carry on. I know my family were all quite upset when the diagnosis of MS was made, so I’d like to help communicate it’s not the end of the world!
There is massive variation in the severity of the symptoms people get with MS. I am fortunate to be on the lighter side. There are people who have been knocked off their feet from the very first attack. No platitudes are going to help there. Research is progressing and better medications are coming. There’s even talk of reversing some of the damage we previously thought permanent. I hope everyone with MS can be treated – and soon.
The silent suffering can make for some dark and dreary days.
More to come.