MG in the UK
Just reaching out to those in the UK as the MG support in the UK is pretty limited I find and this seems like the best place for support, which is ironically in the USA.
It would be nice to have a thread for UK ers as the advice/support given regarding accessing appointments and healthcare doesn't always apply in the UK and our healthcare service is in a bit of a crisis right now. If anyone in the UK has found any useful support groups or communities within the UK for MG I would love to hear about them
Apologies if there is already something like this.
Hello,
Just discovered your forum.
I live in the UK and you are so right, there is only one dedicated Myasthenia charity, called Myaware. They have been very helpful with certain things, but there isn’t a blog apart from face book and frequent Zoom sessions, neither of which I feel comfortable with.
It is so nice to be able to read anonymously, the experiences of other MG patients.
I was diagnosed February of 2023 starting out with double vision and then neck weakness and then straight into a Myasthenic crisis!
Seven weeks in hospital including intensive care, feeding tube and ventilator.
Not an experience I wish to repeat.
Now a year on, and it is the medications that are causing me the most problems, mainly the Steroids. I was put on Azathioprine and began to feel human again, unfortunately they were damaging my liver so had to come off of them, the steroids had to be put up again and now I feel like I’m back to square one.
Any advice as to how to get off of these awful drugs would be appreciated.
I feel less than half the person I used to be and now have steroid induced diabetes to contend with too.
Also can anyone advise about the effects of either the Steroids or the Mestinon on the eyes, as my vision is very blurry now. Putting eye drops in every day but not much improvement.
Looked up the interactions with steroids and most of the tablets the Drs put me on for diabetes, blood pressure etc.do not interact well with Steroids, so they are more likely to kill me off than the MG😂
Thank you all for listening, I know that you all totally understand.
Hi
, this is a great idea! We don't currently have a forum for those in the UK so this is a great idea. We'll be sure to let others know about this thread so they can share their experiences navigating MG in the UK. Thank you! Best, Allison (Team Member)
