Diagnosis Story Part 4 – Over the edge

You’re not getting an illustration this time. It’s time for an angry 90’s Hole cover of The Wipers.

It sums up my experience of early 2019.

Those months are up there in the scales of bad. They get a top spot in the Leagues of Shit.

This is the tale of when my eyes pushed me over the edge.

Eye strain.

I probably need new glasses? Not that unusual. Better get myself to chain-of-opticians-that-shall-not-be-named because I now hate them. Not so simple.

£500+, 8 eye tests at 4 different opticians, 3 new pairs of glasses/lenses and my eyes still hurt. It’s not the lenses is it? What is wrong with me? One rather facetious optician said it might be neurological (he wasn’t wrong though).

Meanwhile, I couldn’t look at light without pain and I’m certain all the optometrists thought I was a hysterical women who they’d never help. It was relentless torment, an eye ache that wore me down. Both do wonders for one’s mental health.

3 months and a stress induced breakdown later, my GP tells me to visit the A&E eye hospital.

All faith in the eye care profession had been lost at this point, but I see an amazing and kind doctor, the first one to even notice what’s wrong. “You have severe blepharitis/meibomian gland dysfunction and dry eyes.” Steroids & anti-biotics promptly prescribed and 3 weeks off work not using a computer. Gets a bit better. But still aching. All. The. Time.

Dry eyes doesn’t sound particularly serious. However, people have committed suicide over the persistent pain that can entail.

You may be thinking, is that even related to MS?

Eye problems in MS tend to be optic neuritis – vision loss and pain, nystagmus – uncontrollable eye movement & double vision. Those are not ocular surface/external eye conditions like blepharitis and dry eye, they are caused from the insides.

I’m still waiting for a follow up appointment at the eye hospital so the specialist can, in his words, ‘join the dots’.

When I told him I had brain lesions at my last meeting pre-MS diagnosis, he went a bit pale. He also couldn’t complete the dry eye test as my eyes were so dry they wouldn’t keep the paper in. That was nice.

There is no doubt in my mind it’s related. This preceded the start of my second relapse.

“The relationship between MS and ocular surface disease is very interesting. In MS patients, associated ocular surface disease may be triggered by the underlying condition itself or may occur secondary to neural interruption.

MS causes the myelin sheath around some of the most important neurologic components to become inflamed. Myelin is a critical component in the conduction of electrical impulses for proper nerve function. When inhibited, sensory impulses are not conducted properly and can result in poor motor control. Also, the motor response itself can be interrupted by poor signaling/conduction to the end target.

For eye care providers, it is important to know that MS patients can develop severe ocular surface disease from insufficient tear production (which is a motor response to a dry eye stimulus), failure to recognize dryness (corneal sensory issues), lagophthalmos (the lid failing to
close properly due to muscle limitatioms) and an increased risk for uveitis.” – Review Of Optometry – The Impact Of Autoimmune Disease – p.68.

I hope the dots are connected.
I’m not mad after all?

Diagnosis Story Part 3 – The oblivious years

Often I wonder, did that consultant who discharged me from hospital on Boxing Day even actually suspect Multiple Sclerosis? Maybe he thought I was too anxious to cope it if it turned out to be clinically isolated syndrome that wouldn’t give me a firm MS diagnosis?

I’ve since learned that in times gone by, neurologists would sometimes withhold an MS diagnosis in the early stages of the disease due to there not being that much you could really do about it. No drugs, less effective drugs.

Live your life in blissful ignorance and put down the weird symptoms to ‘shit happens’ or ‘unexplained virus’ in my case!

Until it gets worse.

Ethics have sort of changed a bit these days I suppose…?

Considering some doctors wouldn’t be fresh with their neurological training it does cross my mind.

Either way, I am thankful I did not know. My disease was early days, I sense I didn’t have much damage at this point. I got to live for a couple of years without any of this rubbish.

It would be the end of 2018 that I started to get some troubling problems again. My eyes.