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?

This post has 1 Comment

1

Leave a Reply

Your email address will not be published. Required fields are marked *

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.

Diagnosis Story Part 2 – A Boxing Day all-nighter

Boxing Day. Can I feel my face? No not really, and I feel weird.

So it goes something like this…

“Mum, will you take me to A&E I think I’m dying. I read online it might be a stroke.” As you can now tell, my rational brain had left the building 24 hours after said extreme headache. It didn’t take long.

“Don’t be ridiculous, OK you can go but I’m not staying with you because it’s Boxing Day” *n.b. Mum is a nurse. Nurse Mum did not think it was anything bad at this stage, and said daughter is prone to some exaggeration at best of times*

Goes to A&E. Probably after a cup of tea. Sits next to man who starts telling me he gets recurring headaches and apparently nobody takes him seriously but he comes to A&E all the time to try and resolve the issue. This was his 20th visit this year or something equally as ridiculous. Why he would go on Boxing Day was beyond me.

Queues are through the roof but I get seen pretty quickly and I’m triaged. I have a couple of what I now know to be neurological exams, eye tests and things like that. Nothing seemed untoward in those.

Very shortly I am speaking to a consultant. The consultant asked me if I’d been drinking heavily, kind of insulted – do I look pissed? I say no and he still asks me again! I’m not lying, I’ve been stone cold sober with my stupid numb face for days.

Said consultant with abysmal bedside manner then proceeds to tell me matter-of-factly whilst alone in the room with him that he believes this could be a sign of a brain tumour, and when pushed further by a now extremely anxious patient, a brain aneurysm.

I don’t know about you, but I didn’t have a clue what a brain aneurysm actually was so I was fully freaking out about the brain tumour I now had, oblivious to the fact that about 50% of people actually die from a ruptured aneurysm pretty swiftly. I was being sent for an urgent brain CT scan so they could see if there were signs of bleeding, but because the headache was over 24 hours prior to my arrival at A&E, there was a potential it wouldn’t show up. But hey, it would rule out a brain tumour.

Phone call to horrified Mum ensues and Mother is at A&E within rapid speeds.

Nurse Mum knows what a brain aneurysm is and her face said it all. I googled it. Fucking Hell, I am 100% dying, R.I.P me, say bye to the dogs. In the moment, it actually seemed absurd and almost comical because I didn’t really feel unwell or like I’d had a bleed on my brain. We kept telling ourselves that surely I was too well to have something like that? But a consultant said it, why would he think it? Maybe it was the brain tumour after all and I’d have a few months of my life left to do some fun things, complete on my flat, or mainly just spend the whole time in a giant panic attack worrying that I’m dying 🙂 (With hindsight I know brain tumours are not always bad and I have some context.)

Anyways it was soon time for my trip to radiology, I’m going in! CT me up.

At this point I did have a bed in A&E, lucky me. When I returned I got the keep the bed for a few hours, but then in classic NHS cuts style I was sent to wait in a random meeting room to try and sleep on a chair while waiting to hear my results. As time passed, and all the staff refused to give me diazepam because it could give them duff neurological results if I was drugged up, the panic started to fade by itself and life with my broken brain seemed like the new normal. It’s funny how quickly you can get used to something. As the hours went by and I realised I wasn’t dead yet, the aneurysm situation didn’t seem to quite check out. The tumour will be operable and I’ll be fine!

Results are in, it’s morning, we’ve been there all night and I’m finally given a bed. I’m told my brain looked ok but I would need a lumber puncture because this could show any bleeding or abnormalities in more detail. Again, I had no idea what this was.

I was then told I’d have the LP within the day and someone would come to see me. I had quite a few bloods taken too.

Hours and hours slip away, and boyfriend was now in attendance.

After a distressing day with the addition of some food that resembled a floating omelette… a large group of doctors now surrounded me. A senior consultant at the hospital and his junior doctor gang attentively listening to his every word. He said the LP was not needed as I was already distressed enough, and the A&E consultant should never have told me what he did. He continued on, my GP’s initial theory regarding it being a virus was the most likely culprit for the numb face. The headache was a migraine. He said it will go away on it’s own, and that I could go home. WTF?

Not the type of all-nighter I was after at Christmas.