Oh no! A relapse :(

So over the last few days, I have had optic symptoms coming on.

It began with a sort of annoying not-quite-right-ness in my upper right eye, almost as though I had a bit of fringe hanging over my eye obstructing my vision. The sort of thing you ignore until you realise you need to stop ignoring it and pay attention.

On Saturday morning I realised that if I covered my left eye, the problem with my right eye suddenly became very apparent. It was as though a blank grey window-blind had been pulled down over the top half of my visual field, with the lower half working fine.

[Fun fact – this is called “Upper Altitudinal Hemianopia“.]

I left a message with the MS helpline at my local hospital. There’s nobody there at weekends, but at least I wanted to get my name on the callback list.

By Sunday, the window-blind had dropped just enough to cover the focal point, so that I could no longer look “at” anything with my right eye, although I still had out-of-focus vision under the horizontal line, with just a greyed out blank above the line.

By Monday, the remaining vision in my right eye was just – gone. Blacked out. I called the helpline again to let them know that it had got much worse and that I needed urgent attention – because when you’ve lost half your vision in the space of 2 days, that is quite scary.

I knew optic neuritis was a common symptom with MS so that’s what I said in the message and hoped they would call me back quickly. Last year there were staffing problems – but the helpline is still my best bet as the GP won’t prescribe steroids anyway unless someone on the MS team tells him to! But waiting anxiously is not my favourite thing to do.

Great news then: I had a call back before 10am, and an appointment to go into the clinic the same afternoon, and a prescription in hand by 4pm.

Now to get the actual steroids, with 60 minutes until closing time. Because of really STUPID rules about VAT on medicine, the hospital won’t dispense prescriptions for outpatients from its own pharmacy, so I have to go and find another one. I may even write to my MP because, what a stupid rule, right?

Last time I had steroids, we went to four different pharmacies before we found one that had the pills and was willing to dispense them. Megadoses of steroids are standard treatment for MS relapses, but they make pharmacists jittery, even when the prescribing clinician writes on the prescription what it is for and refers to the relevant NICE guideline that says it’s OK.

So with under an hour until closing, we went straight for the big Boots in town – not the closest, but the most likely to come up with the goods – and got half the prescription just in time, along with an IOU for the rest.

Wish me luck!


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