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[maryemma]

Hi I have just joined to find out more about MG.It is my husband who has it .He was diagnosed over two years ago when he would sometimes have trouble eating and talking.A few years before one of his eyes would go smaller when tired.The consultant said he was lucky as he had the kind that was treatable 🤔He takes pyridostigamine before eating and sees the consultant every year .He doesn't seem to get tired or other things I've read .we went to a group meeting but most of the people seemed worse than him .What I wonder is will it get worse and does any one know what causes it in the first place ?is it hereditary ? is it not as bad if you get it when you are older like some other illnesses.Does anyone take steroids they were talked about but he said he was o k at the moment how do they help or effect you . Sorry to ask so many questions .Best Wishes to you all .

[AnnetteB]

Hi maryemma

I have had MG since 2013, I am 78. It started with problems chewing on one side and also my eye on that same side but quickly my eyes got much worse. I had a Thymectomy after which I was pretty good for a few years with no problems chewing or seeing, I was even on the tennis court again. Since then I have had a few ‘downs’ during which sometimes I could hardly walk and got Very tired and I had immunoglobulin infusions which perked me up. I am on steroids the dose of which has varied from 45mg to 5mg which made me put on weight and get ‘moon faced’. I also take Pyridostigmine 60mg x 5 a day and Azathioprine 50mg x 2 once a day. This summer in the Heat I went ‘down’ in that I would enjoy myself but had to be in bed half the day which I still do as I get Very tired.The Thymus seems to have grown back and I am going to have another operation in October to remove this, this time by keyhole coming in at the side.

I hope this answers some of your questions. Your husband does indeed seem to have it very mildly.

Good luck

Annette

[maryemma]

Thankyou AnnetteB for your text good luck with your operation I hope you will soon feel better 🤗