241/365 – Checklist for when you first get diagnosed with myasthenia gravis

It occurred to me today, while finally getting around to sorting out my driver’s license, that it would be really helpful to have a checklist of things to do when you are first diagnosed with myasthenia. The first few months after diagnosis are very confusing and I know I would have appreciated anything to make it easier. I’m pictured above in my first months of MG unable to take my sunglasses off even at night. Here’s me today.   

Below is the work-in-progress checklist for people in the UK (please get in touch if there’s anything I’ve missed and I’ll add it on): 

  • Book an appointment with your GP: If you haven’t already done this, book an appointment with your doctor so you can get referred to a neurologist/specialist/consultant. It’s also useful to update them about your condition as it’s likely you will be getting your prescriptions through them.
  • Allow yourself time to grieve: No matter how you take the news about having myasthenia, allow space to grieve in your own way. The worst thing you can do is be hard on yourself at this time – whether you can’t stop crying, you’re numb or you want to fight it head on, be kind to yourself during the acceptance process. 
  • Identify support – No matter how cool you think you are with the condition, it’s important to have people you can lean on during the weeks and months that follow. 
  • Get involved in a support group: No matter how many supportive people you have around you, there are certain things they won’t be able to fully understand unless they have myasthenia. Getting involved in a support group, like Myaware in the UK, can help you through the process of acceptance. If you don’t feel strong enough (physically or mentally) for a meetup, you can get involved online via the various Facebook groups.
  • Read up on your condition: Myaware has lots of information on myasthenia, medication and coping with your new condition (not as scary as other material you may get when you google).
  • If you’re struggling to cope, get free counselling: If you are struggling to cope with your diagnosis, Myaware offers free counselling to members or ask your doctor about free NHS counselling. It’s a big change and it’s ok to ask for help to get through it.
  • Notify the DVLA about your condition: If you drive, you’ll need to fill out a CN1 form to alert them about the change in your health. They will ask your consultant and doctor if you are fit to drive. 
  • Claim your NHS card to get free medication: More information about the medical exemption card you are entitled to when you have myasthenia gravis on the NHS Choices website.
  • Getting free/cheaper travel: If you are no longer able to work and/or your condition is making it really difficult to get around, you can apply for a disabled persons rail card, a blue badge if you drive and, if you stay in London, a freedom pass.
  • Remember myasthenia is only part of who you are and it doesn’t have to be all bad: When you are first diagnosed it can feel like your life is dominated by your condition due to never ending hospital appointments and doctors visit. It will calm down and your life may well get back to near enough normal. In those early days, it’s important to try to find the positive changes of your journey. Although it doesn’t always feel this way, it could be a lot worse.

That’s all I can think of for now, so please get in touch if there’s anything I’ve missed.

2 thoughts on “241/365 – Checklist for when you first get diagnosed with myasthenia gravis”

  1. Hi I too have had MG for one year but I am now 69. I first had no energy, couldn’t walk far, could only eat bits at a time, couldn’t talk after a few minutes, some double vision. All muscle related but if I rested for a few minutes I could re do my tasks but only for minutes before having to rest. My doctors said it couldn’t be MG because it was too rare! I put my condition in Google and it came back MG. told my blood doctor and he gave me a test by injecting me with something and I was jumping up and down. Saw a neurologist then could not speak, or eat or swallow or walk far went into hospital and had five days of expensive medicine and it slowly turned me round. It was a slow recovery with steroids but now I am pretty well back to normal and take 7 steroids every two days and reduce them one every two weeks. Fantastic. Stan. Shilton.

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