Annie you are a sweetheart for helping us. You know it upsets me more that my baby sister has it than me. I guess we have kids and cousins that need testing also. Geez I was thinking my sisters Doc should get her on some meds pretty quick to try to prevent the double vision like I have. She still works but I"m retired.
Mike
Quote:
Originally Posted by AnnieB3
Geez, Mike, I must've forgotten about your Mom and her siblings. I guess the good news is that your family is about to make history, and get lots of attention. The bad news is that MG sucks.  It's manageable though.
This site is a bit complicated but well worth the read. Down towards the end are several odd duck acetylcholine diseases, including familial MG ones. I printed it off at one point, just in case they ever shut the site down. It's such a wealth of info that you can't find elsewhere.
http://neuromuscular.wustl.edu/synmg.html
Sure sounds to me like your sister has MG. Bad doctor for pooh-poohing her and thinking she knows everything. No one knows everything.
I know I'm a broken record but you guys should have your B12 checked on a regular basis. There's something called autoimmune polyglandular or polyendocrine syndrome where people tend to have more than one autoimmune disease. Not that I think you would but since MG runs in your family, it's best to be on the lookout for others like pernicious anemia, thyroid issues, etc.
Your sister's docs should evaluate the leg "numbness," which is partly why I mentioned the B12. And sometimes weakness can be "felt" as numbness. When a muscle isn't getting a signal to work, it will be numb, like when you cut off the circulation to an arm you are sleeping on. A good doc can figure out what is sensory symptoms like numbness and what is weakness.
I'm sure you guys will get good care! That really helps. I'm sorry you both have this disease but you'll be okay.
Annie |