I wrote a while ago on what was happening with me – especially health wise and with my eyes.

A summary of that is: along with a worsening of the conditions I have, my double vision, nystagmus and blurry vision had also worsened considerably, but were also variable during the day. (Think of a face with four eyes and two mouths and you will know what my evening vision is like!)

My GP wanted to get urgent neurology appointments mainly due to the double vision.

I saw the neurologist (The gatekeeper to what I needed). His letter back to the GP was full of mistakes and missing information, but – I had an apology – by phone and in writing, and new, corrected letters issued.

I’m now waiting for an ophthalmology appointment. I’ve been waiting for three months and not even had a letter with a date. The Neurologist has given them a nudge with his updated letter giving the correct information, but still nothing. (Update: As of Aug 2022 - 9 months wait and still nothing!!)

The Neurologist suggested I see an optician for a second referral to try and speed things up…. I go this week, armed with all the info on what my conditions can do to your eyes and the ‘comorbidities’ that go with them – just because not many people know about it!

From the point of seeing my GP to talk about worsening double vision and blurring, and seeing the Neuros – not one person has actually looked into my eyes! This appointment means that will happen.

The MRI had the results I expected – confirmation that something seen on an MRI 30 years ago is still there; an anomaly in part of my brain – explained at the time as possibly MS, or just a good explanation for my wobbly walk and inability to balance. It wasn’t in an area of my brain that would explain my eye issues, so it has been assigned as ‘unimportant’ to the current issues(!) My wobbly walk and inability to balance did cause some concern at this last appointment, but the fact this anomaly hasn’t grown gives more of an indication I don’t have MS. The scan also confirmed my thoughts that there was nothing nasty causing the double vision. (This is where my knowledge from having been a children’s nurse who specialised in neurology is very useful!)

Electrical conduction tests on my hands, face and leg showed everything worked, but also that I had “a lot of pain and spasms” (I think I knew that!)

So we wait…..

The ophthalmology appointment will hopefully give a classification for what my eyes are doing, which will in turn give me access to helpful stuff. But if they catch me on a rare good day – who knows!

Update!
The optician was great – I let him know that my double vision can change hour by hour…..His reply was along the lines of “No kidding – it’s changed a few times in the last few seconds!”

Strangely, it was encouraging that this could be seen on a day I thought was a good one.
He has prescribed baseline glasses (The level I would need on a good day).

Because of my age and the fact the double vision now affects my distance vision, I will have to wear glasses all the time and then have some new reading/knitting/crocheting glasses. (I have clip on magnifying lenses for really bad days – a similar idea to the clock repairer’s ‘two pairs of glasses on top of each other’ in The Repair Shop). I was advised not to have varifocals or bifocals for health and safety reasons – my balance is so poor and the nystagmus sometimes dizzying, so the optician was worried I’d fall over and damage myself!

This won’t improve how long I can read for – it will still be difficult and painful, but this will improve my ‘glance reading’ that I’m now well practiced in (Look for a couple of seconds, look away then look again – I sometimes look like I’m shaking my head when reading, which is quite amusing.)

All in all, it’s good to have proof that none of this is in my head (other than that anomaly!), because sometimes you start to believe that it is.

It’s real folks….but they’re not quite sure what to call it