Midnight
Active member
- Joined
- Aug 23, 2007
- Messages
- 71
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- Other
- Country
- US
- State
- USA
- City
- Anytown
Hi all,
I finally got to the ALS clinic and they think I may have MG. It is as rare as ALS, but symptoms are supposed to be treatable and life expectency is supposed to be close to normal. It is more than I could have wished for. They are sending me to UCLA to attempt to confirm because my blood tests showed negative for this test, but I have some clear atrophe showing up, extreme fatigue, speech issues and issues that are definitely bulbar, and problems with my gait, and they said that MG will sometimes not show in blood tests unless it is in a "flare up". I guess that since I have a good day followed by a bad one and especially having had breathing issues and swallowing issues it tends to point them in the MG direction. I am still waiting on my lymes, but I'll take either one or both at this point.
I sincerely want to thank you all for all you have done for me whether you realize it or not. There is something to be said for human beings being able to relate and understand each other and sometimes a complete stranger that understands is better than the closest friend that has no idea what to tell you. It has made some of my worst days much more bearable, and sometimes even had me laughing. I have never been so scared in my life of being slated to die. It is so very humbling. It has made me realize how precious each life is no matter how long we are here. As a wise man once said "live today like tomorrow will never come"..or something like that
I finally got to the ALS clinic and they think I may have MG. It is as rare as ALS, but symptoms are supposed to be treatable and life expectency is supposed to be close to normal. It is more than I could have wished for. They are sending me to UCLA to attempt to confirm because my blood tests showed negative for this test, but I have some clear atrophe showing up, extreme fatigue, speech issues and issues that are definitely bulbar, and problems with my gait, and they said that MG will sometimes not show in blood tests unless it is in a "flare up". I guess that since I have a good day followed by a bad one and especially having had breathing issues and swallowing issues it tends to point them in the MG direction. I am still waiting on my lymes, but I'll take either one or both at this point.
I sincerely want to thank you all for all you have done for me whether you realize it or not. There is something to be said for human beings being able to relate and understand each other and sometimes a complete stranger that understands is better than the closest friend that has no idea what to tell you. It has made some of my worst days much more bearable, and sometimes even had me laughing. I have never been so scared in my life of being slated to die. It is so very humbling. It has made me realize how precious each life is no matter how long we are here. As a wise man once said "live today like tomorrow will never come"..or something like that