Hey, I didn't want to muck up your IVIG post anymore! I'm posting this mostly for your sister.

I would highly suggest that your sister get a book about MG and read it. But since she is so stubborn, I guess that won't happen.

I'll say it again, MG is a clinical diagnosis backed up with tests. A negative test doesn't prove anything.

If she is on drugs, they can possibly affect both the antibody and SFEMG results. If she has an IgG1 or IgG3 deficiency, it can affect the antibody results.

She had a positive modulating antibody, right? And it was negative the 2nd time? Did she SEE the 2nd results? If her numbers were still showing up but not above normal, chances are that simply shows a normal fluctuation in disease activity. Antibody numbers go up and down in everyone, including lupus patients and other antibody related diseases.

She may not have MG. It's entirely possible. But . . . how does she FEEL? What do her eyelids look like? How is her breathing?

Doctors can get it wrong. I know that's not fun to hear but we all know that it happens. I would really hate if she had MG, went about her life as if she was fine and then ended up somewhere, unable to move or breathe.

I simply had to put this out here one more time, in case she's reading the forum. If you are reading, PPMan sister, I have modulating antibodies only and definitely have MG. And my antibodies do fluctuate.

I hope she is absolutely fine and her positive antibody test was lipemic or was done after anesthesia or something that would create a false positive. If it was done at Mayo, chances are it was not a false positive.

Good luck to both of you!

Annie

Hi Annie,
I haven't talked to her in about a week. Last time we talked she was totally confused. She had thought Dr Howards negative single fiber test made it a done deal. I told her what you had told me and she couldn't believe it. As for her test results, she doesn't have them. I told her to ALWAYS get copies they are for the doctor and her. She is the type that gives doctors complete control. She stopped her Mestinon. Last time we spoke her face was drooping along with her eye lids. I'm just giving her time to sort this all out in her own mind. Her husband is not very helpful at all. I hit my knees every morning and thank the Lord for my wonderful, caring wife.
Mike

I'm sorry to hear that, Mike. You are really lucky to have such a great partner. If she does have MG, it will, unfortunately, MAKE her listen.

While I adore the doctor who did the SFEMG, he's not an out of the box risk taker. Unless things look like an MG algorithm, he's not likely to declare that it's MG. I'm sure he has his reasons for being that way.

There's something very empowering about seeing test results and doctor notes in black and white. Again, they often don't tell patients everything.

She has the right to get care, if she has MG. Normal people do not have eyelids that go up and down. Or positive antibody tests.

I wish her the best, whatever she decides to do. It's her life.

Take care.

Annie

I am sure he does. It is the easiest to work according to clear and known algorithms. Many physicians also understand the-primum non-nocere (first do no harm, in the Hippocratic oath) in a very simplistic way -don't treat if you are not 100% sure of the diagnosis/Treat aggressively once you are sure of the diagnosis. They do not realize that in some situations no treatment is more harm, then needless treatment. And in others the potential harm of the treatment may far outweigh its benefit, even if it is indicated. The equation is therefore much more complicated.