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 😉

This post has 2 Comments

2
  1. Nice writing! 2 questions…

    What is ASOS?
    and
    What kind of idiotic, backwards-thinking god-damned patriarchal? system thinks it’s better for the physiotherapists to know about brain lesions than the patient?? (I probably should have typed that in all caps, but I’m too lazy to go back now).

    1. Haha thanks.
      ASOS is one of the UK’s biggest fashion e-commerce sites with an impressive next day delivery service https://www.asos.com

      And yes, physio was treating my neck and could see all my MRI’s (one of which was my spine so he prob thought relevent)- I don’t think he realised I didn’t know. Ha.

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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.