Category Archives: Rare Disease

Myasthenia and eye tests

In the three years that I’ve had myasthenia I’ve been sure that my eyesight has been getting worse. When looking into the (not too far) distance I often mistake bags for children, dogs for bags and children for dogs. Yet in that time I’ve never gone for an eye test…why you ask, well I’ve been waiting for my eyes to be ‘back to normal’.

I didn’t see the point of getting them tested until they were as good as they could and would be again. Since the early days of my MG my left eye has been at a different kilter from the right so when I look up I get double vision. I hoped by taking the medication that over time this would correct itself. But it hasn’t and after 3 years I finally bit the bullet and went to get an eye test. 

The test itself was pretty tough – my vision doubled, blurred and I could feel ptosis come on as my eyes during what felt like hours of tests. I left with a lighter wallet and a very droopy right eye. 

The result of tests shocked me a little – anything more than 60cms away from me will start to blur. The optician asked how I had been functioning? In blurs and fuzzy patterns it seems now, any time I take my new glasses off.

What made me finally bite the bullet was the view from my living room. Although I knew it was beautiful, I longed to see the things Elaine described across the Forth in Fife – the distant mountains, the boats on the horizon and the sun setting – as more than just blurs. 

If my eyes do align again it might be that I’ll need a different pair of glasses although I asked that the optician did not put a prism in the glass so hopefully not. I did this because I had one I my previous pair of glasses when the first symptoms came on (which I lost before I was diagnosed). Rather than making things clearer, it made the world feel at a distance and always tilting which as you can imagine made me feel queasy. 

Myasthenia and post-thymectomy blues

A conversation I had over the last few days about the feelings you have after an operation got me thinking about my thymectomy. While there are a range of emotions you go through, my thoughts were focused on the disappointment you feel if it isn’t an instant success. I thought I’d blog about that nearly two years after my operation.

You go into hospital with high hopes when having a thymectomy –  you read that’s there a 30% chance it’ll make your MG vanish. You try to remember that’s still 70% of people who continue to live with it, but your mind says ‘be positive’. You think your consultant and surgeon have pushed this on you for a reason, right? I mean, it was practically from your first MG appointment that you were encouraged to have a thymectomy. 

Then, as happens for the majority, you have the operation and your symptoms are still there. In fact they may flare up because of the stress your body’s under post- operation. It’s spoken about or assumed by the medical team that you’re not one of the 30%. The good teams will tell you that it takes time for many people to feel the full impact of the thymectomy. Your loved ones will either be too polite to say anything or they’ll be straight up with you – they’ll remind you that hope isn’t gone. But once you’re strong enough to want more than basic comfort, you’ll begin to feel the loss of something you only ever had a slim chance of getting. An easy cure. That’s when you might hit a wall.

That wall will look different depending on the way your mind works and how you react to the thymectomy – for me, it looked like a mountain blocking my path. That I couldn’t hope to climb. Instead I sat down and looked up at the mountain – studied its sharp crags, the rain lashing down around it, the mist lingering at its peak, the broken path leading up at an angle I could hardly fathom. I sat still in the silence of the mountain’s valley and asked myself ‘why did I bother trying’. How deluded was I to think I’d be one of the ‘special ones’. 

As I sat stewing in that anger and frustration, I missed the initial changes.

I barely recognised the stable state I found myself in. Months past and all I had was ptosis and a bit of fatigue. No sign of double vision, slurred speech, difficulties swallowing or weak limbs. I woke from my silent trance to see that the mountain had transformed into a jagged cliff edge with gentle clouds over head and a calm sea lapping away. It was much more manageable now – everything was. While I went for little strolls, I didn’t stray too far. I was scared to try the path just yet for fear that it would shape shift before my eyes back into the terrifying rock face. Or that a surprise landslide would throw me into the sea and my legs would seize up. I didn’t believe the change was real or would last.

The symptoms stayed consistent and I found I was able to challenge myself more with work, with the blog and fitness. I began to feel stronger than I had for years – the only thing that remained of my MG was the fatigue when I overdid it and the ptosis. By the time it came to the year anniversary, I looked to the spot where the mountain had turned into a cliff and saw a rolling hill. The sun was peaking through the clouds now and illuminating a meandering path. This made me smile from my heart outwards and for the first time I considered that the mountain might not come back at all if I was careful. I went for further strolls now – roaming, seeking, testing myself. 

It’ll be two years in September since I had my thymectomy and when I find myself in that valley now, I see only that. A peaceful valley with mountains and cliffs and hills in the backdrop. I walk around safe in knowledge that I won’t fall or find myself scrambling on my hands and knees (unless I choose to).

 When I think about the first few months after the operation, I realise that the dark feelings I had are still there deep down. Like I’ve stored them away so I always remember. But I can look at them from a safe distance and know that accepting them and waiting for them to pass was the best thing I could have done. They probably won’t ever leave me because they were part of the journey of acceptance and because I think of them every time I see my ever fading scar. 

The majority of us won’t have that thymectomy miracle and while it’s good to be hopeful, it’s not the end of the story if it doesn’t happen. Even if it might feel that way at the time. 

Be patient, listen to your body and your mind, embrace what you’re feeling rather than trying to shut it out and pay close attention to the little changes. You might find yourself in that valley with me someday.

364/365 – What’s next for 365 days of myasthenia

And so, the end is near and so I face the final curtain (the longest farewell ever, right). Before I stop blogging in the way you’re familiar with, I want to remind you of what I’m hoping to do moving forward and how you can get involved.

After a year of writing about me and my experiences coping and battling with myasthenia gravis, I want to hand this blog over to you. I had originally thought we could do a week of other people blogging but that’s a lot of commitment. So instead I’ll be looking for guest posts. I’ll continue to post too – mainly when I have something interesting to share.

Calling all aspiring bloggers

Whether you have MG, are the loved one of someone with MG (be it father, daughter, partner, friend, employee…) or have only recently heard of MG, I’m looking for guest blogs about what the condition means to you and how you deal with it. 

The rules

  • Subject: It can be a guest blog about one day/week/year of life with MG, the story of your/your loved ones’ diagnosis or about a specific part of your life: I’m very open to ideas although the one thing I’ll be reluctant to publish is a piece that just moans
  • Word length: I’ll be looking forj blogs to be between 300-800 words
  • Editing: I reserve the right to edit blogs down to a readable size and for grammar/spelling purposes. I’ll also edit blogs to make them more digestible if I receive a giant block of text 
  • Pictures: please feel free to send photos over to insert into the blog being clear about where you think they would be best placed. As you know, a picture can be better than 1,000 words sometimes

Are you ready to blog?

If you’ve read the above and think you’re ready to submit/discuss a blog you’d like to write, just email me at

332/365 –  Digital emergency contact card

I wrote earlier this year about the emergency contact card that you can carry around in your purse. In it you can list the condition, the things your not to take if you are hospitalised, the medication you take and emergency contact details. I’ve just found about the digital version of this. 

Call me slow to the party but I didn’t know until yesterday that iPhones have a medical ID card that can be viewed when your phone is locked. This clever feature asks for similar things to the printed version:

  • condition(s)
  • medical notes
  • allergies and reactions
  • medications
  • emergency contact details
  • blood type 
  • weight
  • height

You can add information to your card through the Health app that is inbuilt from an iPhone 5 upwards. I’ve tried to find out whether there is an equivalent on android phones but I can’t find a definite answer. Does anybody know whether certain android phones offer the same feature?

Once you have set up the information, to test it out do the following:

  • lock your phone
  • slide it as you would to key in code
  • at the bottom left you will see ’emergency’ – click this it will give you the option to either make an emergency call or to view the medical ID at the bottom left corner of your phone

327/365 – #FacesofMyasthenia launched

As I’ve posted about twice now, a few weeks ago and advert for the talent in the tech sector got me thinking about running a #FacesofMyasthenia campaign. After the support of the MG community, we now have a video to launch:  
But to get this to reach as wide an audience as possible, and raise awareness, I need your help kind readers. 

Can you:

1. Use the hashtag #FacesofMyasthenia with each post

2. Can you share your own pic and a bit about your own MG as well as the video

3. Can you encourage friends and family to share it 

4. Can you put your location on the post and encourage anyone else to do the same

Let’s see how far we can get this. 

Here’s the link to the video or you can share the link to this post:

Thanks everyone for getting onboard with this – let’s show the world how beautiful the Faces of Myasthenia are.

312/365 – Maria and Zenaida

Of all the familiar and new faces I spent time with on Saturday at the Myaware Young People’s conference, Maria and Zenaida were the most remarkable. Why? Because they grew up in the same Portugese village, have been friends since they were small and both have myasthenia. The friendly pair openly shared their story with me.

Zenaida was diagnosed 16 years ago back in Portugal – she was told at that time she was one of 500 in the country to have MG. Maria knew of Zenaida’s condition but didn’t connect the dots when she started developing MG symptoms of her own. 

‘We all have such different symptoms – it’s a unique experience for each of us,’ she said.

It was only when she was telling her friend that the alarm bells started ringing for Zenaida – she told Maria to get herself immediately checked out by the doctor. 

I have heard this story often from people with MG – they have correctly diagnosed it in others around them. With it being a rare disease, sadly not everyone who starts having symptoms has a friend or connection that knows about myasthenia. Maria and Zenaida are the first pair of childhood friends I’ve met who both have it.

Zenaida has had three crises during her 16 years of life with MG, whereas Maria had her first terrifying experience of breathing difficulties this year. She said it truly made her understand how difficult the condition can be – she blacked out and woke up in hospital where she spent days recovering.

They have been supporting each other since they were young, but Maria never felt as lucky to have a friend who understands during those first days and weeks of recovering from crisis. 

While this story got me wondering once again about how we develop this mysterious condition, it also made me jealous of the easy understanding these girls share. Most importantly, it reinforced that the more people we can talk to about MG the better chance we have of helping others to identify it quickly.

So just in case you’re new to this blog – if someone tells you they have any of the following tell them it could be myasthenia gravis and they need to go their doctors:

  • muscle weakness
  • double vision
  • droopy eyelids
  • constant heavy limbs
  • squint eyes 
  • difficulty speaking
  • difficulty swallowing
  • their limbs give out 



311/365 -Funding research for myasthenia

So yesterday I covered the key points in the speech given by Myaware’s CEO Ruth Inglew. Today I wanted to look at the research she mentioned.

Nearly £1 million from the charity has been spent on funding research over the last nine years. While this doesn’t sound like a huge number, around £110,000 a year, it is being used to fund some interesting projects.

Read all of the blogs about the Myaware Young People’s conference 2015.

Some of the research that is being funded currently is:

  • A self assessment tool which gives you a medically accurate score to give your consultant and that you can track over time – I wrote about this research trial here when I thought I might be able to take part in it.
  • The University Hospital Southampton is looking at why it takes aziathioprine so long to work (6+ months) and if there are any early indicators to show it won’t work. 
  • Moorfields hospital in London are looking at ocular myasthenia gravis (OMG) and signs of people who are likely to develop generalised MG.
  • In Oxford, there is work being undertaken to look at existing medication to see if any could be remodelled for use on myasthenia gravis. This is what happened with salbutamol – a drug used for people with asthma which was repurposed for those with congenital myasthenia gravis. 

There is some interesting research in that list with a mix of trials for new arrivals to the myasthenia world (aziathioprine/OMG) and also for those who have been in the club for a while now (self assessment/drug remodelling).

Is there anything MG-related that you would like to see researched? 

310/365 – Myasthenia Gravis: the latest

As I mentioned in yesterday’s post about the Myaware Young People’s conference, CEO Ruth Inglew gave an update on the charity’s activities and aims over the next year. 

Some of the information I had heard before and some was new, but it was interesting to hear it all put together.  

An overview of myasthenia

Ruth started by reasserting that it is difficult to know exactly how many people in the UK with MG there are due to a lack of NHS and local authority data. The charity thinks there are:

  •  Between 10,000-12,000 people with a form of MG in the UK
  • 53% over 60
  • 47% under 60
  • A third have ocular myasthenia gravis
  • 600 have congenital myasthenia gravis
  • 300 have LEMS

The charity have a database of around half of the people in the UK who are affected by MG and have in the last year increased the number of new members by 721 people.

It’s incredible to think of how many people there are out there who haven’t reached out for support.

Data from the Neurological Alliance

The next section of the talk focused on data from the Neurological Alliance in 2014.

It said that:

  • 51% of people with MG saw a GP three or more times before they were referred to a neurologist
  • For 40% it took more than 6 months to be referred to a neurologist
  • More than 50% had difficulty receiving treatment or services

Even more shocking than the above is the amount of money being spent on non- elective hospital stays for myasthenia patients – a whopping £16.3 million a year in 2012/2013. 

NHS spend varies largely in the different regions. The charity has calculated that replicating the working methods of the cheapest region across the country, assuming patients in that area are receiving the best care meaning that they aren’t needing emergency hospital treatments, could save the NHS around £8 million a year. There are quite a few ifs and buts in the theory, however the regional differences do suggest there are savings to be made.
There is scheduled to be a National Institure for Health and Care Excellence (NICE) report into neurological problems from 2016, which Myaware is hoping to feed into.

Aims for the charity 

Some of the aims Ruth pointed out moving forward are:

  • Campaigning for medical exemption certificates as one third of people only find out about them through Myaware. I found out after a year and therefore was paying around £30 a month for those 12 months that I didn’t need to pay. 
  • To get accredited GP training to do with myasthenia gravis – whether that is via online training or a seminar
  • Building on this will be new information for medical professionals provided by Myaware – the charity is hoping to create postcards for members to give to medical professionals when being seen by them

More from this talk on research in my next blog.

304/365 – Coping with myasthenia in an emergency

So I’ve been thinking about for a while now about what happens to people with myasthenia, and other conditions, in a war zone for a while now. That’s mostly because of the refugee situation in Europe – there must be people with MG who have taken the brave decision of trying to reach Europe. A friend of mine who has volunteered at an African refugee camp said the first thing that the majority of people need on arrival is medical care. The thoughts have been sparked again today due to the terrorist attacks happening around the globe – we are already living in a time of war.

While I’m comfortable with most parts of having this auto-immune condition, I do worry about what would happen if there was a war like in Syria in our country. Watching this video about what it would be like for a child in the UK really gets the message across of how upside down a person’s life is turned during war and I wonder what would happen to those dependant on medications and medical treatment to keep them well. I worry that the wording in this picture may be reflected in the treatment when it comes to prioritising health care in a war zone – ‘you’re looking well’ so you must be.

While there is the option of not thinking about it as hopefully it will never happen, on week’s like this I find it difficult not to. It would be really interesting to hear of any accounts of people living through war in their home country with MG or similar conditions. It may well be that their treatment continued uninterrupted but the prospect of being in such an unstable environment terrifies me.  

302/365 – This change can stop your myasthenia defining you

After hearing about a couple of people who have recently been diagnosed with conditions, I’ve been thinking about different styles of coping that I’ve witnessed. No one way is right – each person needs to figure out how to come to terms with their new life in their own time. 

Saying that, I have noticed something that people who are still able to live full and meaningful lives share:

They don’t focus on what their condition stops them from doing

Sure everyone has moments of frustration and negativity, but, from what I’ve witnessed, focusing on what you can do rather than what you can’t is what stops you from giving into your condition. It doesn’t only make you cope, it helps you flourish. 

For example, when a friend of mine was diagnosed with multiple scelorosis (MS) she decided to write a list of all the things she wanted to do. One of the reasons was the thought that one day she might not be able to do some of them but she knew, for now, there was lots that she could do. This attitude helped her embrace her new life and every time I meet her I’m filled with wonder about the way she copes.

Like my friend, at this moment in time for everything that I can’t do, there are 100 things that I can. Focusing on the can rather than the can’t makes the world as wonderful a place as it was before my diagnosis.