Covid 19 and MS

The world’s most hated/favourite topic.

I was having a lumbar puncture in hospital at the end of February. Coronamania was just beginning and it was talk of the town. The MS nurse asked if I was worried, I said a little, but not a lot. I was still getting the tube to work but had started using hand sanitiser (I’m gross and probably should have been doing so for the last 10 years already). She advised to work from home if possible and avoid the tube/busy places if I could as they weren’t sure on the risks yet for people with MS on certain treatments/medications. London was obviously going to be a hot spot.

So… I started working from home.

A week later it kicked off for everyone. Covid was getting really serious, people in the UK began to get very ill and the government were taking bigger measures. Including advising us all to work from home, where we could. Ah, yay, I’m not the only one…

Confusion quickly ensued in the MS online community and there were posts flying around everywhere. Multiple Sclerosis was added to the vulnerable list by the UK government, and shortly after that, stronger immunosuppressive therapies were added to the ‘extremely vulnerable’ list. Some people in the MS groups were receiving the shielding government letters, others were not.

If we have MS and we are on Disease Modifying Therapies, do we need to social distance, self isolate, shield, or get a rocket to Mars? Also, what the hell do those terms actually mean? So many people were and still are confused by it all.

[FYI: The British Heart Foundation actually has a very good page explaining each term.]

I started Ocrelizumab in February, one of the highly effective disease modifying therapies for MS. It’s an immunosuppressive treatment that you have via a hospital infusion every 6 months. The drug removes B cells – dampening your immune system so that it stops the MS attacking your brain & spine. A secondary effect of this is that you can be more at risk of developing infections. So, in theory it wouldn’t be great if you got Covid. Everyone on this treatment has to get a pneumonia and flu vaccine before starting. Getting ill can also trigger relapses or flare up old symptoms.

The Association of British Neurologists came out with guidelines and Ocrelizumab (also known as Ocrevus) was added as a moderate risk, so lots of people had their infusions cancelled or delayed. Nervous lol at those of us who had just had it/are on it. I was a getting a bit more worried by now! You can’t ‘reverse’ Ocrevus, as it still works up to a year after the last dose.

There were 3 other MS treatments considered high risk – Lemtrada and Mavenclad (if you’d just had them within the past few months) as well as HSCT (haematopoietic stem cell transplant) which is pretty heavy hitting as it involves a lot of chemotherapy to completely reset your immune system.

More information is surfacing by the day about the mechanism and treatment of Covid 19. A lot of people who are becoming seriously ill are having an intense response to the infection, where their body starts attacking the lungs. Articles started appearing in the MS community hypothesising that some people on certain immunosuppressive therapies may be at an actual advantage (not proven though) if we got Covid and healthy in other regards, because it might stop the body from having this overreaction that is seemingly so lethal. To a non science person, it does seem kind of logical, but it might be wishful thinking.

China is also trialing an MS drug as a potential treatment (Gilenya/Fingolimod). Our 5 minutes of fame!

The neurologists soon moved Ocrelizumab into a lower risk category, and it’s only certain DMT’s that are still high risk. Full list can be seen here.

It all started to seem less scary.

As of now, it seems clear that a lot of people with MS are not at a much higher risk of severe Covid 19 – unless you have other co-morbidities, have breathing difficulties from your disability or have just had one of the higher risk DMT’s in the above list. In which case shielding has been recommended to many.

Still, it isn’t something any of us should be racing to catch as Covid can be serious for even ‘healthy’ people.

However, if the UK Government are going for the ‘herd immunity’ approach, unfortunately the majority of Britain will end up with it at some point over the next year. Prof G at Barts Royal London wrote a post last week on how best we can prepare.

The full guidance from the MS Society is here.

Personally as the weeks have progressed, I’ve alternated from not being worried about it at all, to feeling scared – mainly for my older relatives, to concern that my next infusion of Ocrevus will be delayed (which I’d rather it wasn’t, but understand if it is…) to sort of wanting to catch it and get it over with…. which I know is not something to wish for. A lot of you have thought the same thing, I’m sure.

As someone who is prone to anxiety, I think having MS sets you up for this sort of scenario more positively as you’ve already had ‘bad’ medical things happen and actually, things are not always as disasterous as you quite imagined. You can cope if you have to, there is no alternative. Also quite honestly, I have too much Animal Crossing to play to spend my days worrying about worst case scenarios.

How about you?


^Me socially distancing on Animal Crossing. 

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.

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.

Patience

Patience. What’s that?

In today’s world where you can get an Amazon parcel delivered same day, at worst, next day – patience is something that a lot of people my age lack.

Long gone are the days of ADSL internet and having to wait hours to edit a Geocities website. You can do anything online in a matter of seconds.

Living in London, I can usually get anything I need or want pretty quickly too. Places are open late, food delivery of any type of cuisine arrives at record speeds.

Sometimes (ok, a lot) I am the most impatient person available. I like to get things done. By default, I have a personality that is high energy and anxious.

A diagnosis of Multiple Sclerosis is not a fast or easy situation to be in for anyone who does not have the chill factor of a snowman. Unlike lots of things in life, even a lot of money often doesn’t/can’t speed the whole thing up…

From my last episode of symptoms to diagnosis it took 4 months, and that is because I paid to save myself the mental torture of waiting another 3 months (my NHS appointment would have made it 7 in total, and I am very lucky to be able to afford an appointment).

I had already been told I have MS by my GP, accidentally by my physiotherapist (it’s good when they blurt out there’s lesions on your brain and you have to pretend you knew already.. awks) and the radiology reports were pretty self explanatory.

I’m not the kind of person where not knowing is a welcome strategy of coping. I need to know everything and now.

Knowledge is power and I prefer to arm myself with as much information as possible. Even if it’s bad, I’d rather know and deal with reality. As though I’m ‘doing something about it’.

Working on the internet my whole life means I have some pretty amazing Google research skills. One positive I’m willing to admit about myself, as a self deprecating Northerner!

Once I managed to find a long lost girlfriend of a man who owned a restaurant in France, with minimal information. She didn’t use Facebook, he had tried. So all I had was a maiden name, a location, a short description of her life and family, the business her dad was in. It took me about 6 hours of reading paperwork for shipping companies and boats to track her down, and it turned out she was actually dead :(. I didn’t tell him.

I digress.

A diagnosis of Multiple Sclerosis normally has to meet the McDonald Criteria, and everything else has to be ruled out. It’s not something you can diagnose without the evidence, as 1. It’s a serious disease, 2. The drugs you will then take (if necessary) are strong and expensive medications. A mistaken diagnosis wouldn’t be great for anyone involved.

Patients need to have evidence of two clinical episodes (relapses) and proof of disease activity in different areas of the CNS – brain and spine, or two areas of the brain. Lumber puncture results can also help diagnose the disease quicker too. Many people have relapses separated years apart.

There are people out there who have waited decades to receive their diagnosis. I consider myself lucky. My diagnosis was relatively quick, almost 3 years from my first ‘episode’. Luckily for me, I had no idea I might have MS until July last year. The mental element of ‘Not Knowing’ for years, or being told you might have MS but do not meet the full criteria yet – is difficult to come to terms with. Patients need patience.

There is more and more evidence that the sooner you treat active MS, the better. I was told that if you are treated with a disease modifying therapy within the first 5 years, this can have a lasting impact on long term disease outcome.

However, it is not often a ‘medical emergency’, so even if the scans show you are riddled with lesions, you don’t necessarily need to have started a DMT yesterday. It can wait a little while – unless you are in an active relapse and may need steroids to help recovery.

I think Multiple Sclerosis can teach many people the true art of patience.

Learning to wait for weeks between scan results, waiting for decisions to be made regarding your treatment, if you are able to physically have it, organizing vaccinations, waiting for the treatment itself. None of it is quick for most of us.

Noun: “The capacity to accept or tolerate delay, problems, or suffering without becoming annoyed or anxious.”

Couldn’t we all do with a little more patience? Deliver my ASOS order a day late, these days I don’t mind as much 😉

Diagnosis Story Part 1 – Happy Christmas

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…

Hello, it’s me, MS

Hello and welcome to “Hello, it’s MS”. It’s a bit like a bad ‘knock knock’ joke where MS just appears in your life.

This is a blog about all things Multiple Sclerosis. Experiences, musings, life. It will naturally have more of a focus on the relapsing type (RRMS) as this is what I personally have been diagnosed with. I’m a 30 year old girl living in London. I was diagnosed in 2019 but had my first attack in 2016. On Christmas Day. Happy Holidays!

I’m lucky that my disease has not been that nasty yet, mainly annoying. I am on a DMT (disease modifying therapy) early and hopefully I’ll remain relapse free. I’m planning to live my life the same as before (…OK, maybe a few less beers). I wanted to have a place to write about MS and all the things I wished I knew or couldn’t find out when I was frantically Googling pretending I was a neurologist. I like reading other people’s experiences so maybe this will help somebody too.

Feel free to blame any spelling mistakes or bad writing on my brain damage.