Myasthenia Gravis

[livingwith]

My mother is 83 years old. She is the mother of 7 children and has outlived 3 of them. Very independent and healthy. Never smoked or drank and up until a few of months ago she was a merchant at several local swap meets. She was diagnosed with Myastenia Gravis approximately 2 years ago. Her symptoms started out with the common droopy face and eyelid debility. The doctor would prescribe Predestone and the symtoms would totaly disappear in 2 days.
On December 19 I went to visit and fix her telepho...Read the full article

[rezmommy]

Hi,
I am sorry to hear that your mom is having such an awful time. I was just diagnosed with MG in Nov. 08 so I am learning. I have had prednisone by IV though so I know that it is available. Perhaps your mom needs to be transferred to a hospital that has a neurologist that is familiar with MG. I will keep you and your mom in my thoughts.

[mommalu]

You should find a way to get your mother to Mayo Clinic in Rochester MN. My dad's neurologist diagnosed him, put him on prednisosone & mestinon. He also referred my dad to Mayo where they see hundreds of MG patients a year - rather than the few in a lifetime that a regular neurologist will treat. Your mother DOES NOT need to be referred to Mayo - you can make the appointment. It sounds like your mother is experiencing Myasthenia Crisis - which means that you might be able to get her in right away. My dad went from scotch taping his eyelids open and sipping soup (dropped 28 pounds in 2 months) to enjoying life again. Mayo in Rochester is a godsend! The airlines gave us both 1/2 price tickets since we were flying to Mayo Clinic. The motels are reasonable, too with the Mayo discount! You should find a way to get here there. There are 3 Mayo hospitals in the US, but the Rochester location is the best by far! AZ or FL residents come to MN, even though they have Mayo in thier own state. My prayers are with you and your mother ...

[myrtlerp]

Dear Kevin,
I'm so sorry to hear about your mother. I was diagnosed with MG this past September. It hit me hard and fast. I had no idea I had it until this first episode. It started with double-vision and weakness and within 2 weeks I was taken to University of Utah Medical Center. Thank God for Dr. Mark Bromberg. They started me on Mestinon at first and it made all my symptoms much worse. Finally, they put me on CellCept and Prednisone. They also gave me steroid boosts every few days and I had intravenous immune globulin twice and several doses of plasmapheresis. I also had a thymoma and it was removed.
Finally, after 7 weeks in the hospital, my symptoms improved. Perhaps, like me, your mother was put on the wrong medicine. I hope this helps.

Gayle.