Originally Posted by jwaters15

Hello to all. I am writing this for my dad. He has been diagnosed for a little over a year with MG, but he has had symptoms for much longer. I would like to share some of his story in hopes that someone has experienced similar things and maybe have some answers.

Last Feb. we were told that my dad has ALS. He had a speech problem for about 5 years and we went to the doctors and they werent able to find anything. Last. Feb, he got progressively weak and started choking. The neurologist in our area said he was SURE it was ALS and started prednisone but thats about all. Well about a week later, Dad had experienced a crisis- it was getting hard for him to breathe and one of his eye lids started drooping. It was then that the Dr. said it was MG. He went in the hospital for a IVIG for a week and came out on top! He felt awesome....for about 3-4 weeks. The rest of 2010 summer was followed with IVIG about every 4-5 weeks until it got to the point where he only was getting better for about a week and then not at all after the IVIG.

Our neurologist really didn't give us much hope, just to keep doing the IVIG and it wasnt working. So we searched out an MDA clinic about an hour away and started going there in Oct. of 2010. They scheduled a plasmapheresis tx for 5 days that worked good. It lasted til about Christmas and at that point he started choking, eye lid drooping and breathing difficulty. He was hospitalized on New Years Eve for pneumonia and crisis and had to be intubated for 5 days. He had 5 more days of plasmapheresis and did good. Came home and had to go back at end of Jan. for another plasmapherisis for 3 days.

He did good but started getting bad about a week ago. He is now in the hospital getting plasmapheresis. They have upped his prednisone this time and he takes mestinon and cellcept. The doctors keep saying the cell cept should start kicking in. He also had a thymectomy in June and he had an enlarged thymus but no thymoma. His symptoms usually start with the one eye lid drooping and then speech gets slurred about 2 weeks later followed by choking and difficulty breathing.

Any one have suggestions? He is 50 year old and is trying to not get depressed. He is single and I am an only child (im 23) so I'm pretty much all he has. Any comments are appreciated. Thank you!!