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.
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.
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?
It was the lead up to Christmas. A period of unlimited festivities, many late nights, lots of drinking, a few awkward secret Santa’s… you know the drill. Everyone across the country is feeling bloody knackered and counting down the days till their time off. Nobody feels particularly fresh and most of us feel run down.
There had been an event, it was a work night and I think there was an ABBA tribute band. I came into the office the next morning and was feeling a bit worse for wear… but I was there just doing my thing.
I’d probably just eaten breakfast, yet still counting down the time until it was acceptable to get lunch (11.59am FYI). At some point in time my lips started to feel really tingly, I’d been using some new lip balm so had assumed it was this. Maybe an allergy or irritation? Weird but not that bad. I stopped using the lip balm. Carried on my life as normal.
Days passed and the lips were still feeling weird, and it was just one side. The right hand side. It felt like it was actually getting worse and spreading into my face. I thought maybe I’m just going mad?
Slightly prone to becoming neurotic at the best of times I think I gave it a week before I called my trusty GP (this is me being restrained and not wanting to waste anyone’s time). By this point one side of my face felt like I’d had an injection at the dentist that was wearing off. The GP said it was probably a virus and it would likely get better on it’s own but if it got worse come back to see her. My Google history was starting to look a bit extensive, but everywhere mainly pointed towards Bell’s Palsy – though my face wasn’t droopy so I was confused. What kind of strange unexplained numb face virus is this? I wasn’t panicking though because I knew I was run down and very tired. Nothing that bad really came up on my searches and rationally I knew I hadn’t had a stroke.
That appointment had been at the end of the week, school was soon officially out and everyone had gone home for Christmas. I left London and visited my family for the holidays.
My parents don’t drink alcohol so usually going home is a good detox. I don’t tend to drink and get lots of sleep.
It was Christmas Eve, just a normal night in with a bit of extra chocolate when you’re in your late twenties with no kids.
3am or 4am.
Not when I was planning to get up… suddenly I awoke with the worst headache of my entire life. I immediately vomited. It was extremely painful and I thought there was something seriously wrong and I was going to die. Maybe a bit dramatic but it was really bad. I shouted my mum, she took me downstairs but the light and the sounds from the TV were too much. I couldn’t deal with any of it. I had some painkillers and eventually the headache eased off after a few hours. In the back of my mind at that point I was really worried I’d had a stroke or something awful, but again, I tried to push the thoughts away. Surely I’d be in a worse state if it was something like that? It must be a migraine, people say they are terrible and I’d never had one before.
I went back to bed eventually, however when I woke up for Christmas Day, the right hand side of my face was now… really numb. It felt worse. Like the injection at the dentist but as though it had just been administered.
Not wanting to go to A&E on Christmas Day and not able to ring my London GP, Christmas Day just happened, I felt strange but I hoped I would feel better tomorrow…