2014Chronic diseaseDiagnosisGilenyaMRIMultiple SclerosisSymptomsTreatmentTrialTsyabri

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.

3 thoughts on “Falling apart with MS Part 2: The diagnosis confirmed

  1. Hi, Now our friends no about your MS, we can support you. Love from everyone. Mum Dad

    Sent from my iPhone


  2. Hi there! Just wanted to say that although it is all overwhelming and scary, especially at the beginning, having MS will eventually just become your new normal. You need to give yourself time to go through the stages to get to the point of acceptance, and learning to adapt will get easier with time.

    You are not alone in your battle. I go on an MS forum (www.shift.ms) where people from all over the world come to talk. When you are ready, I really suggest having a look there, it’s been really helpful for me to talk to people who can relate to what I’m going through 🙂 (also if you sign up it will be me sending you a welcome message as I volunteer for them!)

    Wishing you strength and positivity

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