My sister is returning to Duke after a year of non-treatment. She is going to see the head of the ALS Center. Last year she went for a single fiber test which turned out to be a very poor visit. She got discouraged and has not had treatment for a year. She is currently responding to Mestinon. Anyway she was telling me that her local doctor had diagnosed her with familial MG. Yesterday I was looking through some of my old Dr. reports and discovered my earlier doctor had diagnosed me with the same thing. He did not mention this to me. After a little reading I believe the treatments for this is the same as most other MG cases. However I have been pretty nonresponsive to all treatments except IVIG. Does anyone have any thoughts on this form of MG?
Mike

Mike, I don't have any thoughts on this -- sorry. But, I wanted to comment on your doctor's notes. I recently got some copies of my medical records -- and was amused by what my doctor "said" he told me. My mom was in the room during my appointment -- she had to drive me because I was having double vision. I didn't remember the doctor saying some things he put in the notes -- of course my memory is somewhat compromised. But, my mom TOOK notes during the visit -- and SHE didn't hear him say these things EITHER!! Funny about doctors and their notes, huh????

AHHHHH, life.......are we having fun, yet??????

BTW, so sorry about your sister -- but, so GLAD that she is FINALLY getting treatment!! I know this has been weighing on your heart!

This was by far the most through doctor I have seen. Each visit took 45 minutes to one hour of "face" time. He talked very little and seemed preoccupied. His treatments were very low key and not aggressive at all. Once I got his notes I could see that he was concentrating on my disease not chatting. Each office visit would consist of numerous exercises which he computed with a stop watch and his notes were 4-5 pages each visit. I just wish he had been more aggressive in my treatment.
Mike

Wow, Mike! So, sounds like a GOOD doc -- just not completely "thorough" (per you not getting the aggressive treatment you wanted). I tend to like this type of doc -- the low-key, non "threatening" -- who spends a LOT of time. BUT, my fourth grade teacher told me that I ask more questions than Quaker has oats...............so, I usually get the info I need from the docs. It's a fine line -- I'm sure my docs either LOVE me or HATE me. Teaching docs are the ones who seem to get along with me the best -- they are USED to answering questions.

The doctor who gave the "funny" (hahahaha) notes wasn't my MG guy, thank goodness. I absolutely adore my MG guy. He's a professor of neurology and a HOOT!

BTW, I had some of those "aggressive" type docs at one of the top ten hospitals --- and I almost became a basket case. They tried to push and shove me into treatment options that I KNEW were NOT in my best interests. I'm probably natured somewhat like your sister -- needing to be comfortable around the physician who treats me. Do you remember the movie, "The Doctor", with William Hurt? Storyline is that a doctor-"god" needs surgery and seeks treatment from his doctor-"god" friends -- only to find that he doesn't like the way they TREAT him as a patient. So, he goes to the mild-mannered Adam Arkin (who makes much less money and has a much less desirable clientele). Anywho, Adam Arkin is kind and competent -- and does a WONDERFUL job on Hurt's surgery. And William Hurt learns his lesson -- patients are PEOPLE!! I think about this movie a lot when I go to the doctor -- it is VERY true!!

Didn't mean to write a book -- there is a weather front moving through -- and I'm FULL of migraine meds -- they make me "talkative" --

Well, I can't say that I'm surprised.

I'm glad someone took your sister's situation seriously. MG can run in families. My friend and her sister have MG. All it means is that genes for a disease may be more virulent in some families than in others. My Aunt had polymyositis but no one else in her family has gotten it. And certain genetic groups, like Northern Europeans (Norway, UK, Germany, etc.) can get autoimmune diseases more often in general.

If you or your sister ever get new symptoms, like upset stomach (celiac disease) or clotting issues (APS) or fatigue (pernicious anemia, Addisons, AI thyroiditis) or any other symptoms, see your doctors. That's why I'm always advocating to check out new symptoms because some people have genetic pools that might be on steroids.

It's amazing what doctors don't tell us. I think some doctors live in their heads and don't realize they haven't verbalized their thoughts! I know some people like that and they are not always aware that they're doing that. Of course, some docs often don't have time to say everything but you'd think "BTW, you have familial MG" wouldn't take long to say and might be sort of kind of maybe important.

Jana, I think it's fun when people are talkative. Growing up around some way too stoic Norwegians, I prefer the alternative! I love that "more questions than Quaker has oats" comment. Too funny.

Mike, if your sister has questions, she should really try to find an MG group. It helps so much to share experiences in person. I hope she can get the treatment plan that works for her. It may not be the same as yours, even if you are sibs.

I think the important thing to do is to let your other family members be aware of this. They may not get MG but then they can look out for any early signs such as napping or double/blurry vision.

Take care,

Annie

Yes we talked to my other sister and a few cousins. We think we know which side of the family to watch.

My sister and I chat almost daily. She really need to get rid of her "Wonder Woman" syndrome.
Mike

I would think that "familial" MG just means that more than one person in a family has MG; it's probably more of a medical history data point than anything else. And it's certainly something that first- or second-degree relatives need to be aware of, and to let their doctors know about; it could lead to an earlier diagnosis for someone down the line.

http://myasthenia.org/LinkClick.aspx...Q%3d&tabid=103

The above link gives you some statistics about familial myasthenia. There are two types of familial myasthenia and since treatment and treatment response differ, it is important to know which you have. There is the kind that is associated with predisposition to autoimmune dieases, which is the type I have, even though my father and his only sister had MG. Then there is the type that is associated with specific genetic abnormalities. You can read about them on myasthenickids.org. If any of you have the autoantibodies, then it is likely that all of you have autoimmune MG, but if you don't, it is possible that you carry specific genes that result in myasthenia. nc

Mike, I think I've given this site to you before.

http://neuromuscular.wustl.edu/synmg.html

It's one of the most comprehensive sites on MG and related syndromes.

You guys aren't lucky to have MG but you are lucky to have each other.