Today I had a pre-booked appointment arranged for my quarterly check up – but as I had already done my Month 7 bloods on Friday with the neurologist, and as we have bigger fish to fry right now, it didn’t feel like a regular checkup….
Good news – the steroids are working. I have the ghost of vision beginning to return to my right eye.
More discouraging news – this happened on Monday and there is no further improvement since then. I sort of expected that once it started coming back, my vision would return as swiftly as it went, but that it seems was wildly over-optimistic.
So the new plan –
- I am booked in for an MRI on 22 March, a couple of weeks’ time. This is going to be a normal head MRI but with additional eye pictures. I will also get contrast, which will be my first time with that. The purpose of the contrast is to highlight current inflammation more strongly.
- The ophthalmologist referral is in the system and my MS nurse will follow up on this to ask the doctor whether he would benefit from having MRI images (in which case the appointment will be afterwards) or no (in which case maybe before).
- We’ll give the first dose of steroids time to do their work – and it isn’t a great idea to have steroids in the system at the same time as the MRI anyway – but if there is no significant improvement by the 22 March, we’ll probably try a second course which will be low risk in all the circumstances.
More encouraging is the longer term prognosis, which is very positive with any permanent deficit likely to be along the lines of poor colour perception, or increased fatigability – but there is no reason to imagine I will not be pretty much back to normal before my birthday in May. So that’s my objective.
For the immediate future though, on the back of the rather deflating news that we’re talking weeks rather than days before my life starts getting back to normal, I’ve taken an upsetting decision to call it quits work-wise. I’ve agreed with the boss that I will be off sick at least until the MRI and will review the situation thereafter.
Now I just have to keep myself occupied and distracted while my optic nerve slowly heals. Sigh. Sad face.
I had a big cry and then I pulled myself together and have decided to treat this as a little holiday. I will not sit on my backside all day every day feeling sorry for myself. I will go out and be brave and have mini adventures.