Falling apart with MS Part 2: The diagnosis confirmed

I’ve thought long and hard about this post. It is the most distressing to date, and I was honestly hoping to muster up a sense of humour or dream up a literary device to soften the blow. Unfortunately, my mental acuity is not particularly high at present, and I will simply stick to the facts.

Starting MS treatment

I have at least one new lesion, confirmed by (two ridiculously long) MRIs to be a new (and my second) MS event. In Australia, diagnosis is confirmed and treatment is recommended after a second MS event. Treatment is life long.

There are about ten MS treatments approved in Australia, and two of the newest have been recommended for me.

  1. GILENYA (Fingolimod): A tablet to be taken once a day. This sounds great, until one realises it can cause the heart rate to drop dangerously low and the first tablet (and the first tablet after any break in treatment) requires six hours of observation in hospital (just in case I am the lucky statistic whose heart stops). It is my preferred choice, nevertheless, as it means I can travel without having to go to a foreign hospital for my standard treatment.
  2. TSYABRI (Natalizumab): An IV infusion once every 28 days delivered as an outpatient in hospital. This was my original first choice, however my eligibility depends on whether or not I have the JC Virus. About 50 per cent of Australians have this virus, but it is not a concern unless you happen to be taking Tsyabri, at which point you are at risk of Progressive Multifocal Leukoencephalopathy (a fatal demyelinating disease) that is really best avoided.

I’m awaiting blood work results and the damn chicken pox vaccination to leave my system (apparently coming down with chicken pox is dangerous if you have MS). I will then start one of these treatments in February 2015.

While both have a nauseating list of side effects complications, I am actually eager to take one of these drugs. Both are part of the newest generation of MS therapies, and are light years better (in terms of both effectiveness and side effects) than previous treatments (which include drugs also used to treat cancer and bone marrow transplants). In terms of the future, research appears to be heading towards stem cell therapies, and if treatments go that way or there is a trial I can join, I will happily sign up.

Leaving the PreVANZ Trial

As I am now fully in the MS world, I am no longer part of the PreVANZ Vitamin D trial. Needless to say, I have already replaced my unmarked daily pill (that could have been 10,000mg, 5,000mg or 1,000mg Vitamin D daily, or a placebo) with at least 5,000mg liquid Vitamin D every day.

Finally, I would like to go on record and say that I received exceptional support from the MS team both while in the PreVANZ Trial and now starting treatment. Thank you.

Inspiring MS: Kayla Montgomery is the very best of MS

I’m 15 years older than you, Kayla Montgomery, and only a year into my MS diagnosis. All I can say is well done. You inspire me.

Thanks to You Tube and ESPN for the video.


Falling apart with MS: ‘You’d bleed just to know you’re alive’

November was no bed of roses. After 33 years in this body, it is surreal when it stops working as experience suggests it should.

In short, the numbness and tingling became worse. It is often there, for an hour here or a day there. At a low level, one gets used to it. But when the dysaesthesia (feeling sensations that my nervous system imagines just for fun) becomes incessant, it drives me mad.

Along with the numbness and tingling comes fatigue, weakness, heat sensitivity, lack of coordination and disorientation.

The entire experience is exhausting. Exhausting.

Think about it this way. My immune system is attacking my nervous system, and my nervous system is trying to defend itself. Or to be even more blunt, one part of my body is attacking another part. Lets just say that climbing Machu Picchu with altitude sickness back in 2010 was significantly easier than walking to the park this week.

Anyway, over the last year I have developed a habit of holding or touching a numb part of my body with a functioning part… You know, just to make sure I haven’t misplaced a limb or something. It is an attempt at self-protection, but one I am going to have to improve.

Because over the last weeks I also developed a habit of scratching the exposed numb areas in an effort to actually feel something. Turns out that is not a good idea, as I scratched till I bled because I couldn’t feel it.

These aren’t severe scratches, I know. The point is I lacked the sensory functioning to realise I was hurting myself. That worries me, as one day I might touch a frypan or mishandle boiling water and cause real damage. This photo was taken three days after the incident (ah, the bliss of denial). I know many of those who know me hate photos that show I am sick, so apologies in advance. But this blog is a record of my disease… So just scroll down quickly.

The scratching incident, followed by a day where my thermostat stopped working and I could not control my own body temperature, saw me back in the neuro ward.

The ward is – against all expectations – strangely comforting. It is full of doctors and nurses who take me seriously when I say that it feels as if ice cold water is pouring down the inside of my skin. I cannot begin to explain how comforting it feels to have professionals acknowledge that I feel these things (and that I am therefore not losing my mind).

While I passed the physical, last week it was more drugs for me – the very same steroids I was pumped full of when I got on this merry-go-round last year. Three days as an outpatient given 1,000mg methyl prednisolone through an IV (what I will receive every time I have a flare up or a new episode).

It isn’t that bad, although it leaves a strange metallic taste in the mouth, as if I have been chewing on alfoil. And it makes me even more fatigued and disoriented than I was already. Highlights include being so tired I forgot how to pay for a cab, running into an arrogant man in the supermarket and being shouted at by him, and strangers thinking I was drunk at 10:30am when really I was just a bit uncoordinated.

So, what does this all mean? Aside from the fact that I am now that ‘sick person’ people talk about with a slight awkwardness.

There are only two options.

The best-case scenario is that this is a flare up of my existing lesions (likely that pesky one on my spine). If so, I stay in the PreVANZ Trial and continue on my merry way.

The decidedly not good scenario is that this is a new episode. If so, I start treatment for MS.

And the only way to determine this is via MRI. So I now have two to look forward to – a 30 minute one on my spine, and an 80 minute one on my brain.

Lucky me.