Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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Keepsonablessin 10/17/2016

I have seen no benefit (except relief from double vision) with Prednisone and Mestinon and the side effects have been horrid. I see the neuro-opthalmalogist tomorrow and hope he doesn't want to up the meds. Or do I hope he will and I'll see better days?

flutebell 10/17/2016

Hi Keepsonablessin,
Good question! I'm see neuro #3 in two weeks, hoping to actually get a diagnosis. I'm sure if it is MG she will say it is time to treat with more than Mestinon. I'm preparing myself emotionally for side effects with no quick response, especially if put on steroids or immune suppressors. But I can feel myself gradually getting worse. No eye symptoms for me - all general. But I've never had a full crisis and if meds keep me that way, they will be worth all the grief. Slurring my words several times a week will be the symptom the easiest for me to track, I think. And getting those dratted pills down on the first try too!
Good luck tomorrow!
Flutebell

Keepsonablessin 10/17/2016

Thanks. I haven't had a crisis, either... Although the nurse from the neuro-ophthalmologist called me today to check on my symptoms and told me I should be going to the ER any time I experience shortness of breath, have trouble swallowing, drool, etc... THAT'S EVERY DAY!

nnyguy1960 10/18/2016

Treatment of MG is somewhat trial and error, but I felt a lot better when my neuro laid out a plan. He admitted that it might need to be tweaked, but at least I has a plan with goals and measurable outcomes. His plan was to hit me with high doses of prednisone to bring the symptoms under control, then hopefully remission. This was a bridge until cellcept became effective. He told me to use mestinon like aspirin. It wont treat the causes of MG, but it will treat the symptoms in the short term, Once things stabilized I went on a long, slow prednisone taper with the hope to get under 10 mg eod. I was lucky, and I was able to get off prednisone. I still know the mg is there, but it doesn't effect my quality of life much and we will see what the future brings. Was his plan common sense and simple? Yes, but you need a plan with measurable outcomes.

Keepsonablessin 10/18/2016

Well, my appointment today with the neuro ophthalmologist ended with him putting me in the hospital for IVIG. 3 days. Gonna have a team of specialists working with me. Hope this is the answer!

Quen1966 10/19/2016

Good luck I hope the IVIG is a great treatment plan. I really hope you feel better and your symptoms improve!!!!!

Keepsonablessin 10/19/2016

Thanks... 2 doses so far and I really don't see any change yet from when I came in.... but I'm getting valuable information from the team working with me!

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