Myasthenia Gravis (MG)

Greetings from Orford, Tasmania

My name is Marian, 65 YO, and apart from MG, a fit and healthy retiree.

Thank you to Glenda for getting the problem of the missing New Topic tab fixed so that we can post on this forum.

I thought it would be good to make contact via this forum with others who share my new way of life, closer to home than those in the UK and USA on similar forums. I'm sure to have questions that other members might be able to answer, or to share their experiences. If I ever find myself in Sydney I'd love to attend one of your meetings. I have had contact by email and once by telephone with another member in Tasmania who was very supportive when I was first diagnosed (and since) and hope to meet her soon wen she is holidaying here on the coast.

At the moment I'm doing pretty well after being diagnosed October 09 and having a rapid decline from double vision to crisis and high dependency in hospital over Christmas where I received IVIg over 5 days and got started on prednisolone and Imuran as well as the Mestinon I already had. I believe I have been fortunate in getting an early diagnosis and treatment especially after reading some of the horror stories that others have to tell about misdiagnoses and inappropriate treatment, sometimes for years.

Now I am managing on 30mg of Mestinon as required and am looking forward to my second reduction of prednisolone next week when I see the neuro. Must say it's a relief not to have the creeping heebie jeebies and cramps in my legs/feet, and not having to run to the toilet every five minutes on the lower dose of Mestinon.

One thing I'd like to ask other MG women: Have any of you developed a dark shadow on the upper lip as a side effect of prednisolone? If so, is it worth doing something about it - waxing or laser for instance? Or is it likely to go away as the dose is tapered off? I also hope my new shape, that of a hippopotamus, will shrink back to normal as the pred goes down. (Vanity, vanity, all is vanity!)

I look forward to hearing from other members but you might have to open a New Topic as there's no Reply button on this page yet.

Regards to all

Marian

Hi Marian, thanks for your input. We have had a few teething problems getting this bulletin board up and running. We are hoping that the new board proves as popular as the old one!

Hi Not too many of us around are there?. I ended up in hospital 2 months ago after my eye went crazy watching t.v. I had a headache for about 2 weeks that just would not go away.
Everyone was convinced that I had had a stroke but I felt it was something else and went to my optometrist and he actually thought it was myasthenia gravis. That kind of pushed things along a bit and they put me in hospital for tests, which came back as possitive .
I take prednisolone now I was on mestanon for awhile and I am hoping to reduce my level soon. Lots of lovely side effects nice round face now....savings on future botox won't need it at this rate, lots of heartburn and burping drives you mad and clothes don't seem to fit so well around the middle....but I feel really well and my eye is ok and I can drive again and have a new outlook on life...enjoy it!!!!!!! you just don't know what is coming next.
I am a 62 year old woman from the Blue Mts outside Sydney. I live with my family and 3 cats and a dog. I am an illustrator and artist and enjoy textile art and quilting as a hobby.
Paula

Paula ... the annoying thing is that WE CAN NEVER USE BOTOX! We will just have to age gracefully i guess. I was against botox until I met a 48 year old that looked 30 with her botoxed face! It was funny thought that try hard as she might .. she couldn't put on an angry face.