Nope, Mike, I sure didn't forget your family history. Believe it or not, your situation has been "bugging" me and one of the reasons I came back. Nor did I forget your amazing wife. I wish I had a husband like her, if you know what I mean.

I still have to wonder if something is being supercharged or if something else is going on. The body is like a biochemical cascade. If the adrenals are stressed, that can make MG worse. If someone is getting Hashimoto's, they can be weaker. Have you seen an endocrinologist just to make sure nothing endocrine is off? Drugs can effect the endocrine system too, as can aging. Have they checked your parathyroid status?

I don't mean to stress you or your fingers out. I honestly believe something is being missed. And while you have good docs, seeing other specialties is useful. Specialty doctors see through their own lenses and may miss things. I'm glad you have doctors you like, except the left-brained ALS specialist who is probably not creative enough to help you.

How is your sister, BTW? Still in denial?

Well, if I think of anything brilliant - don't hold your breath - I'll let you know. Anyone else have any ideas for Mike? I wish I could play ping-pong. Or dance or sing or lots of other things!

Annie

Yes my sister is still in denial. She went back to Howard's office and saw another Dr there. As soon as he saw that she had seen Dr Howard he wanted nothing to do with her case and her exam lasted about 5 minutes. It appears Dr Howard is his mentor and wouldn't dare go against what he said. I got Dr Howards book and the first thing I read was him saying that a negative single fiber test does not mean you don't have MG. But that's not he told my sister. She is really discouraged at this point but doing ok on mestinon. So I'm giving her space right now. She agreed to come here and see my Neuro as her next step. I'm not thinking he will give her a dx but I just want her to have a positive experence first. So far all 3 of her visits have been very bad.

I'm sorry about that, Mike. There are some doctors who cave to the "status quo" and can't go up against the word of monolithic institutions. What's funny is that UNC has the oldest neurology dept. in the country! Dr. H can be a little wimpy. He's completely overwhelmed by taking on too much (teaching, research and clinical). That's not an excuse, however, for not doing all he can for the patients he decides to see.

I have the book he wrote with Harper and Merrigioli too. I kid in my book that doctors take a "Hippocritic Oath," where they swear to do one thing but say something completely different to patients. It lets them off the hook if they end up being "wrong." Oy.

No doctors are perfect. They all have their little quirks. We really do have to try to work WITH them to get good care. But it sounds like your sister tried but still didn't get it.

Your sister deserves the best care. You too.

I am thinking of talking to my Neuro about going to Wake Forest for a second opinion. He mentioned it a couple of months ago. I think he knows several of the Drs there. It's about a 2 hour drive from here. UNC is 4 hours.
Mike