Had my neuro appointment yesterday and he feels that copaxone is not working for me and it’s time to try something else. So a round of bloods, booked in for a brain MRI and then back once that’s done to discuss my other options.
It’s a bit disheartening to find out that the daily injections have been a waste of time but at least he is being pro-active and not leaving me for another 6 months before he makes a change.
We’re not talking about moving me to Gilenya or waiting til the end of the year for the new oral drug, Tecifedra.
I also had the JC blood test although Tasabri isn’t where he wants to go yet in terms of treatment.
So I’m a bit disheartened and disappointed to be honest. He explained that the stronger drugs carry more side effects which I had been hoping to avoid by trying Copaxone. I’m also pondering if going on an interferon initially would have been a better choice although the neuro reckons that neither would have worked for me.
I’m staying on copaxone for now until I’ve had the MRI and blood results and then I’m back to the neuro to discuss my options about treatment.
Also my daughter just about broke my heart as she came to the hospital with me and waited with my mother. They were chatting to another MSer who was further along the road than I was. She was telling my mother that she has two small kids. I’m a single parent and my daughter is ten.
I was telling my daughter that yes, I might have the same symptoms and struggle in the same way or I might not. I just made an off-hand remark about how the lady with the small children must find it hard to manage the little ones. My daughter said to me “well mom, if you have another baby I’ll always be around to help you if you can’t do it yourself”.
That made me feel so bad for her, that she is thinking about that at ten years of age. She wanted to come with me to the hospital but I regret bringing her.