Sunday 12th Oct - Lost the feeling in my tongue (thought I'd burnt it on a hot drink)
Monday 13th Oct - Lost further feeling in my tongue where I knew it was definitely numb not burnt!
Tuesday 14th Oct - Started to lose the feeling in my bottom lip
Wednesday 15th Oct - This spread to the left cheek became more obvious in my lip
Thursday 16th Oct - Noticed my skin was feeling numb around my left ear and scalp
Friday 17th Oct - Lost a little hearing in my ears and finding it hard to move my bottom lip comfortably so the straw is still firmly in place!
Having spoken to my MS nurse it looks like I'll be starting second line therapy - a new drug called Fingolimod which is a tablet I will take every day to (hopefully!) reduce the number of relapses by about 50%.
This decision has been one I've been thinking about for the past month or but it looks like I have no choice but to escalate my therapy now.
This decision has been one I've been thinking about for the past month or but it looks like I have no choice but to escalate my therapy now.
VS
What does this mean?
1. This means I'll be coming off first-line therapy - Rebif. Sooooo....NO MORE INJECTIONS!!! weeeeeee! This means no more bruises, no more flu symptoms after EVERY injection and no more sensitive arms and legs.
2. This also means I can put off infusions a little longer :) The alternative therapy to the Fingolimod tablets is a monthly infusion called Tysabri. This is meant to reduce relapses by around 80% and is the preferred treatment advised by my neurologist... BUT having been to an infusion room where they give the infusions (along side chemotherapy patients) I just don't feel i'm ready for that just yet.
Fortunately I can go from the tablets to the drip in the future if needs be, but I wouldn't have been able to go from the infusion/ drip to the tablets. That pretty much made the decision for me.
SO, on the 13th November (lucky or unlucky?) I will go in to hospital and take my first dose of Fingolimond. For the first dose I will need to stay in hospital and have ECG heart monitoring because this drug reduced the heart rate significantly to start with and then after 24 hours it should level out
Overall I'm staying strong and am still training in the gym regularly, coming to work and seeing friends when I feel up to it. So on that note... I must come off my lunch break and get back to work! :)
If any MS-ers out there have questions about symptoms I've experienced, medication I've taken or training with MS or any thing else really... just email me! paulasanchez@outlook.com
P x
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