This week is the kind of week where you find yourself saying "gee it's been a long week" on Tuesday morning.
This afternoon I'm off for my first post-treatment MRI.
I've been telling anyone who will listen that the result doesn't matter because I'm only half way through treatment, but truth be told I'm anxious.
Taking a MRI series of your brain and spine takes quite a while in that tiny noisy tube, but it's not the procedure I'm worried about. I figure once you're a mother the opportunity to lie down and listen to music for 90+ minutes is considered 'me time'.
They've also changed the dress code, so I'm allowed to wear my own clothes and not that terrible hospital gown that gapes at precisely the wrong moment and flashes the technicians regardless of how careful you try to be.
It's been six months since treatment and eleven months since the MRI that confirmed my MS diagnosis.
I'm travelling well. My optic neuritis has resolved with no vision loss. I have no new symptoms. My blood test results have all fallen within normal ranges. The ridges that treatment left on my fingernails have almost grown out. All the signs are good.
I'm conscious enough to realise that worrying about today's outcome achieves isn't helpful. It certainly doesn't help to manifest my miracle. And yet, I just can't shake this feeling of foreboding.
The reasonable side of me realises that even should today's MRI show new lesions on my brain or spine that it's no reason for despair. I'm only half way through treatment - perhaps my naughty immune system needs more punishment before it will leave my myelin alone. That said, I suspect should I have developed new lesions it's less likely that Lemtrada is going to be the silver bullet we've been praying for.
So that, my friends, is the contents of my head about the contents of my head today. Should you look at the clock at one thirty this afternoon will you please send a little miracle manifestation my way?
A x
My lovely, you are in my thoughts, as always xx
Thinking of you, especially at 1.30 x
No words for you except I am thinking of you Amanda, especially at MRI hour. Big hugs x
Thinking of you today lovely. xxx
Hi Amanda, my name is Julie, like you I live in Glass House Mountains, I have two daughters and I have MS. I have lesions on my spine and brain. I have really appreciated you sharing your experience, so first up, thank you! I am currently on Gilenya as my treatment but, due to the dangers associated with PML my treating neurologist is advising to change treatment. She has mentioned Lemtrada and also a new similar treatment that is in last stages of development that is an oral tablet rather than infusion. I am going to wait for its release at this stage. I just had my MRI and no new lesions!!! I hope your MRI also confirms good news, which I trust it will. I wish you all the very best and share your hopes and dreams for an MS free future!
Hi Julie,
Thanks for introducing yourself. We have a LOT in common! I was advised against Gilenya for similar reasons. Lemtrada seemed like the natural choice for us. I have an appointment with my neurologist tomorrow. I'm hoping for no new lesions, but they upgraded the MRI machine since my last scan, so it's likely to show lesions that weren't on the last scan (regardless of whether they're new or not!).
Wishing you an MS-free future too.
A x