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.
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You make a great hypothesis. I wonder how we could test this? With my first CIS episode (ADEM) the neurologist would not commit to how likely it would be that I would have another episode or go on to develop MS, no matter how I asked the question. He would say “Some people will never have anything like this again” and guided “go out there, live life, buy that house, continue dating etc”. I met my now husband a year after ADEM and remember saying “if it happens again it’s MS” and I have enjoyed 9 blissful years of no major events. After having ADEM and being aware that I did not have MS for those 9 years I did feel life is beautiful just as it is and would pray that I wouldn’t go on to develop MS. Still, however it seems MS has been doing something in the background and I received my diagnosis this year.
Agreed ignorance is bliss and maybe neurologists do this to allow us to consider and process the prospect of a terrifying disease at arms length.
Perhaps a doctor or neurologist may visit this blog one day and let us know 😉
There’s definitely pros and cons to it, isn’t there! They update the diagnostic criteria pretty regularly too, so things keep changing and it seems is now getting diagnosed sooner. The last updates were 2017 to the McDonald Criteria.
It was summer 2019. I was turning 30 and was on my way to New York!
New York was great, it was very sunny, really hot and we walked everywhere. My pedometer steps were through the roof. We drank all the beers and ate all the delicious foods. It was a busy week for my 30th birthday, I wouldn’t say it was a ‘relaxing’ holiday as we were had a rather action packed time, but it was very fun.
The day we flew home I had complimentary tickets that night for the Spice Girls through work. I didn’t sleep on the flight, and so I’d stayed up for 24 hours – dropping my bags off at home, then straight to Wembley ready for plenty of free drinks and a good time…
I remember parts of that night, but it is patchy at best. We were sat next to All Saints, and I’m sure they were probably thinking which reality TV show are these losers from? We also met Holly Willoughby and had some v. awkward photos. As the night came to an end I drunkenly got on the wrong tube, fell asleep and ended up in Zone 6. I live in Zone 1/2. To me Zone 6 is the middle of nowhere where people have nice gardens and hedges and basically live in the countryside. I was desperate for a wee and there were no more trains. It was the last train. After about an hour of what on earth do I do, I finally managed to get an Uber. Yes I got home safe but I think that night definitely contributed to a bit of brain damage.
I was back at work a few days later. And I now was the proud owner of a huge infected eye. This lasted for about a week. I was obviously utterly run down.
The infection had started to clear up, I’d been at the eye hospital and they sent me on my way and so off I was to a friends birthday drinks…
But earlier that day I’d woken up with a very itchy hand. This was itching like no other itching. The itching would not go away and was getting worse. I was in a work meeting and I had to leave early to go to Boots because it was so. damn. itchy. It was kinda concerning. I’d never had anything like it. The chemist gave me some anti-histamines and some cream for itching. It sort of eased off as the day went on.
And so here I was, that evening, attending The Birthday Drinks of a friend. I did not drink that heavily that night, but I felt really strange. Was I feeling really drunk/weird because I’d taken anti-histamines? Who knows. On my way home we got a takeaway pizza and some ‘garlic’ croissants – Papa Johns (gross, wouldn’t recommend).
The next morning I woke up and my hand was completely numb. Of course I thought this was my own doing, a drink too many, bad food. Too run down. It will go away.
For the two weeks following I felt horrendously tired. I couldn’t concentrate at work. My hand was still numb. As all good internet trained doctors do, I Googled it. I diagnosed myself with carpel tunnel syndrome and ordered a weird wrist thing off Amazon.
Optimistic.
As the weeks passed, we were now on week 3 and the hand started feeling a bit less numb, but I had a new addition to the symptoms list. I started to get electric shocks down my arm and back every time I bent my neck forward.
And so, again I Googled that. It didn’t sound that normal, maybe a trapped nerve which wouldn’t be good? I rang the GP. She was from my point of view, seemingly overly concerned. She wanted to see me that day. So, off I went… She did a few physical checks on me, bending my neck, making me move limbs etc. She asked me if I’d had any other symptoms and I told her that my hand had been numb for weeks.
She looked a bit shocked that I had not mentioned this prior. I still was not convinced there was anything serious about any of this. Me: “Do you think it’s just a trapped nerve?”. Her: “Maybe… but I want to send you for an MRI, we will send you for an urgent MRI for speed. We need to see what is going on in your spine.”
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?
You make a great hypothesis. I wonder how we could test this? With my first CIS episode (ADEM) the neurologist would not commit to how likely it would be that I would have another episode or go on to develop MS, no matter how I asked the question. He would say “Some people will never have anything like this again” and guided “go out there, live life, buy that house, continue dating etc”. I met my now husband a year after ADEM and remember saying “if it happens again it’s MS” and I have enjoyed 9 blissful years of no major events. After having ADEM and being aware that I did not have MS for those 9 years I did feel life is beautiful just as it is and would pray that I wouldn’t go on to develop MS. Still, however it seems MS has been doing something in the background and I received my diagnosis this year.
Agreed ignorance is bliss and maybe neurologists do this to allow us to consider and process the prospect of a terrifying disease at arms length.
Perhaps a doctor or neurologist may visit this blog one day and let us know 😉
There’s definitely pros and cons to it, isn’t there! They update the diagnostic criteria pretty regularly too, so things keep changing and it seems is now getting diagnosed sooner. The last updates were 2017 to the McDonald Criteria.