Coping With Myasthenia Gravis

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 telephone. When I arrived she was speaking with a real bad lisp. I thought she had a stroke and raced her to emergency. After testing, a stroke was ruled out. My mother was admitted in the hospital for further testing and observation. Days later the doctors were focusing in on her Myasthenia Gravis. They felt that it was just another episode of Myasthenia gravis and medicated her accordingly.

After a couple more days she started losing her speech and couldn’t swallow. She couldn’t even swallow her own saliva, let alone her medications. The hospital wanted to put a tube down her nose to administer her meds but this was impossible due to previous sinus surgery. Mom agreed to take the Prednisone crushed with crushed ice. Yuk!!! What a soldier. This worked for awhile but one day she choked on it and thank god I was there because I was the only one present to help her clear the blockage. Well now she can’t take the medicine that really works because Prednisone, I’m told, is not available in IV form.

The doctor won’t put a feeding tube in her stomach because he says she could choke due to acid reflux. So the hospital is giving her Mestinon and has been for 5 days. There has been no improvement. After 14 days the doctor finally decided she had to be nourished via IV. She was also put on a breathing machine against her wishes. My mom is caught in a vicious circle. She can’t get the correct meds to heel her, she can’t eat to gain strength and the doctors here have no antidote. I go see my mom every chance I get but all I see is that she is fading away fast. My mom is my best friend and I can’t lose her. Please! Please! Please advise, ideals, anything is welcome.

Sincerely,
Kevin