Would you like the treatment that gives you thyroid problems, brain infection, or restricts life for the next few months?

In autumn 2017 I met with specialist MS nurses  nurses to discuss the disease and treatment options.  My summary of these is:

1. A tablet daily, which is new and has a risk of you developing a brain disease – PML.  I’ve seen PML and how it can take high functioning individuals and prevent them working so no thanks.  Low risk but extremely high consequences.
2. IV type infusions that you take every day for a week and then a top up a while later and never have any other treatment.  Highly effective but you need a lot of time off work for the treatment and a few weeks to recover afterwards. Also around 30% of people end up with thyroid problems that need an op or daily medication.  Add to that the rather strict food regimen for about 3 months afterwards to prevent listeria, which makes any work travel (if I still have a job after all that time off) almost impossible. Another no.
3. Beta interferons which are injected every day to once every 2 weeks , give flu like symptoms, low mood, need monthly blood tests and can be kept out of the fridge for a maximum of 7 days – well they rule out any adventures without a fridge so no.
4. Copaxone – injected 3 times a week, can be stored out of the fridge for a month, generally knocks you around.  This is my choice as it means I can have adventures.  It is described as moderately effective so reduced relapses by around 1/3 and whilst mine are still low level and seem to be infrequent I will take this as it seems to fit the lifestyle I have and want to continue.

Copaxone works by mimicking the myelin which surrounds the nerves and tempting the MS baddness into attacking it, instead of the myelin.

There is a long booklet on the different treatments and options which, if you are interested, can be found here .  Personally I found it to be a choose your own adventure story where none of the outcomes are that much fun.