I wish I would've been more assertive with neurologists early on, but I wasn't. Here are some things I might've asked or said. I hope it helps.


You've told me what you DON'T think is causing my ptosis and weakness, but you haven't said what you think MIGHT BE causing those things.

Sleep apnea doesn't cause ptosis or generalized weakness, but MG can cause sleep apnea or hypoxemia.

What other disease shows a dramatic improvement with Mestinon and IVIG? Are you going to test for that?

How can a patient test positive on an AChR antibody test and not have MG? What else causes a positive test result?

How can you not look at test results and doctor notes—without seeing any new test results—and declare that I don't have MG? Is that scientific? Is it objective?

Do you have x-ray vision? Can you "see" the neuromuscular junction? (There you go, HT, a clarification!) I know, that one is a bit too snarky, but there was an occasion that I wish I would've said that!

If my eyelids are already at the weakest they're going to get at this time, there might not be any change with an upward gaze test, right?

Are you an MG expert? If the answer is, "No" . . . you might say, "I'd like to see an expert, please. Is there one here?"

How many MG patients have you seen?

Wouldn't an EMG or a SFEMG look negative when someone is on the drugs that improve the autoimmune process that is causing weakness?

Why would I want to pay for a test that would most likely be negative?

Is there a reason you don't trust what my neurologist has written or done to evaluate/diagnose MG?

Do you not trust what I am telling you?


Sometimes it's hard to be assertive while you aren't feeling well, and especially when the doctor is being so absolute and contrary.

I hope things are going better.

Annie

Annie-

Thank u!! That list is all sorts of amazing. I'm super assertive but this is a nice, succinct, utilitarian list that doesn't allow them to just write us off. I'm dealing with this w sjogrens now despite being very symptomatic and w low c4, high rf quant but neg for the traditional sjo markers.

If they would only appreciate the fact that it's not like we are sitting around dying to be misdx. We all want a proper dx w the best treatment possible. So if this isn't SJO then is it lupus, etc. and if the other poster doesn't have MG then what?!

Amen to your list! Ill be using it.

You can see it with electron microscopy and that has been the case for years.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2229756/

http://www.ncbi.nlm.nih.gov/pubmed/8818976

Even better:

http://www.neuro.fsu.edu/~dfadool/Rose1.pdf

I'd ask the question with absolute enthusiasm and tell the doctor to look at it if he hadn't.

There needs to be a youtube video showing how the NMJ in an MG patient functions with and without Mestinon or an immunosuppressant (obviously from that article, it would need to be created from pictures). Maybe that will be uploaded one day ... would get the doctor to "focus" -- draw his attention to what could happen at the receptor level when the meds are withdrawn instead of concentrating on "hey you don't have ptosis today."

I think I'd watch that video with rapt attention. (Ever get excited about a movie only to find out that it's an absolute bore? )

I meant "see" it, as in x-ray vision.

I expected that you were probably saying that. . . just emphasizing that it's a good topic to bring up.

Hi,

You asked Annie who has a positive Achr treat and is told they don't have MG, well having been a member of DINET ( forum for Dysautonomia) for quite a few years now I will tell you I've seen plenty of posts from people saying they've had positive Achr tests and been told they don't have MG!

I'm wondering if these people have mild MG or some type of subtype of MG that also goes onto develop into dysautonomia. A lot of them despite being told they don't have it are treated with mestinon ( its used to boost upright blood pressure) and they find they do feel better on it less fatigued etc. However the doctors would argue that they feel better as their low blood pressure is being corrected and ignore the Achr test.

I've been treated as having MG, seronegative and then was sent to see a UK expert who said I didn't have MG. I was then left being allowed to take mestinon "as it made me feel better" they ignored the fact that my ptosis disappears when I take it and comes back when the dose wears off. They tell me I don't have MG and now say my ptosis is caused by low blood pressure - however I measured my blood pressure for a few months when I had ptosis and there is no link. I get ptosis when my bp is normal and when it is low! But what would I know I'm just a mere patient!

I hear and feel your frustration. Hopefully the Dr that is treating you with IVIG and mestinon won't be silly enough to stop these just because some big shot at the Mayo has ignored previous test results and thinks he knows better!

Rach x

Annie your list of statements is fabulous.. that should be poster sized!!! I asked my first neuro only one of those questions and she flipped me to an expert.. the question was..

How many other patients do you have with MG.. she didnt answer me but told me all about her MS patients and Lupos patients etc.. She did, however, help me find a fabulous doc who only treats MG.. so the issue was solved.

I did, however, have an issue with her nurse who asked me. "do you think this is from anxiety?" Needless to say.. lovely people who have no clue.

MG?me, I hope you're doing okay.

Annie