Myasthenia Gravis? Anyone?

[Brewbees]

Hi,

Have been dxed with Myasthenia, it finally gives me an explanation for all the fatigue I've been suffering. But I'm scared, and don't know what it entails. I'm only 34, so this has come as a massive shock. The dx was made after they took blood and my ARA were high.

Anyone else with this? How does it affect you? I have a myriad of symptoms that I'm told all tie in to this. I'm being checked for arthritis too, and told I 'likely' have Fibromyalgia too.

I do... happy to talk via pm

Brewbees, I too have myasthenia, mine is myasthenia gravis (MG). There is a support charity Myaware which I am a member of. You can find it at www.myaware.org. Once in touch with them, it provides access to a closed Facebook group where all matters related to MG can be discussed by a very supportive group. I'm a member of that group and you will find loads of people on it ready to answer all your questions.

My sister was diagnosed at the age of 17. She had a thymectomy 5 months after this which massively improved symptoms and now at the of of 51 lives a full, active life as a mum and a nurse. She takes minimal medication.

The most important thing is to be aware of the drugs you can’t have
www.myaware.org/information-for-medical-professionals/39-xii-contraindications-of-drugs-that-can-make-myasthenia-worse

MG only affects 1 in 100,000 people so you will probably be the only patient your GP has with the condition. They shouldn’t hesitate to phone your local neurology centre if they have any questions.

My GP denies I have the condition, and refuses to refer or prescribe. It was an eye doctor some three years ago now who had a blood test done that showed increased Acetylcholine Receptor Antibodies. GP, despite this refuses still to refer or prescribe.

I've read so, so many MG boards, and fill the descriptors. I feel so alone with no GP support, and the eye doctor who carried out the tests retired soon after. No ideas what I'm supposed to do! :(

Can you see a different GP at the surgery? Or change GP?

Change your GP or ask to see another in the practice ? My nan had it 40 plus years ago. My sister has fibromyalgia now. I wonder if there's a familial link ? Never occurred to me before.

Going to look into re-raising it in the New Year with a different GP. As an aside I also have M.E (Myalgic Encephalomyelitis), Fibromyalgia and CSS/CPS (Central Sensitisation/Pain Syndrome).

Thanks for all your posts.