It started out of nowhere - no warning, no build up, no gradual signs. I got a numbness in my mouth, just like I had been to the dentist

 for a filling and a local anaesthetic. You know the feeling where your mouth feels like it doesn’t belong to you - it feels awkward, floppy

 and you have no control over it. Cold to the touch and full of drool. As the anaesthetic starts to wear off you are left with this temporary numbness that you know will soon start to ease and disappear. Except with MG, this doesn’t go away. The numb feeling is just there all the time.

My jaw would ache and no longer open and close like it should. Then the issues with swallowing, speaking, and eating started, followed quickly by choking. That’s when sheer panic started to set in. The muscles seemed to have just checked out, resigned, completely failed. I can still remember to this day the exact time that I thought “I need to speak to someone about this, I need help!”

My GP was fantastic. Within 24 hours I was in front of a neurologist, and so my journey to diagnosis began. But diagnosis is only part of what you really need when coming to terms with MG. What you need more than anything is MG friends and that’s where myaware comes in. Myaware is a community of people that just ‘get it’ like no-one else can.

Back in the days of first diagnosis we had face to face meetings, I went to a few but found it a bit overwhelming and intimidating. Then I got better and went into medical remission for 15 years only for a full-blown MG crisis to hit me all over again 2 years ago. I immediately reconnected with myaware and joined the first available virtual meeting on Zoom. As soon as we all started talking, I felt a huge weight drop from my shoulders. Many of the myaware support team also have MG so unlike most medics you will meet they KNOW what you are talking about because they have experienced it too, not just studied the data. They create a safe place for us all to chat in confidence and support each other.  I attend every online session that I can, but you must be fast as the places fill up quickly and all events are always oversubscribed – just shows how good it is!

I am also a member of the myaware Facebook group which is another brilliant lifeline. It’s a private group and is monitored to make sure that everyone is supported in the right way. No question is too silly, small or awkward. We talk everything from ‘is this normal’ to ‘coping in the summer sun’ to ‘how to frequently cancel invites without losing friends’.

Myaware is always campaigning on our behalf and often invite guest speakers to come and talk to us, again all virtually. They create fact sheets about MG, give up-to-date advice, list medication that we should avoid and provide an amazing info sheet to hand to a paramedic or doctor if you get into a medical emergency - something I had to do earlier this year and the info was invaluable. One day we will get back to in person meet ups, but as the world has changed, I am so happy with my online community and count every single one of them as an MG friend.

Today, I am doing ok. I have come through a summer in ICU, changed my medication plan 3 times, been up and down on steroids like a yoyo and have come to terms with the fact that MG & me will continue to tackle life together.

I am trialling a new IV drug that specifically targets MG, and although it’s still early days I feel great. Better than I have in a very long time, so I am keeping my fingers crossed for me and the rest of the MG community that it continues to work and that it gets full UK approval asap. I really feel that this could be a real game changer and I’m so proud to be part of the process. 

Myaware have given me huge support & regularly monitor my progress. I feel I can reach out at any time and that there will always be a sympathetic, knowledgeable, and genuinely interested ear waiting to listen.

People's Stories