Thursday, March 1, 2012

Just sitting and waiting

The result of today's neuro appointment:



  • Off Copazone - it makes me swell up and we don't know why so off the copaxone come I. Not hugely distressed. I may regret it down the track but it is a means to an ends.

  • Not on Tysabri. I did not want to go onto Tysabri anyway since we do not have JC antibody testing yet. But apparently you need active lesions which I don't appear to have. But we did have a discussion that went along the lines of "I don't want it" "You can't have it but if you could you'd want it." 

  • Return visit in 3 months to see what happens - before both the neurologist and MS nurse go on maternity leave!

  • If I have a relapse then I get another MRI - oh joy! And the Tysabri convo! Since DMDs prevent relapses then not being on one means this is more likely to happen. With my luck it will be optic neuritis in my left eye and I'll end up partially sighted!

There is the option of Gilenya - the oral drug - but Pharmac has not come to the party so it would be $800 per month - I only have a job for another month so definitely not an option!

So not much changed! I did have my eyes tested and confirmed what I knew - I can't see out of my right eye. 

Oh well - life trundles on!

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