I have not gotten my test results, a copy I mean. I was too shocked on the phone to even ask for the values. I just know they're "normal." I'm not sure if I should wait this out and after I get my MRI, go back to the neuro appt I have a month from now... I sort of feel like she's just going to slap fibro on me and tell me to learn to live with it. She's the same neuro who "diagnosed" me with Hemiplegic Migraine without head pain the last go round, and prescribed Topomax telling me "let's just try it and see what happens..." Well, it didn't fix my problems and gave me actual migraines with head pain! Grrr.

I don't think SHE will do further tests for MG. Honestly I get the feeling she doesn't have much experience at all with it. But then my family doc said to come back to him if I wasn't satisfied with what she does for me... I just don't know whether I should wait til I see her again? And make sure she really is a jerk and it's not just my overactive imagination (you know, the same one that's given me all these lovely symptoms). My husband has a nurse practitioner friend who has shown an interest and wants a list of my history/symptoms. He said maybe he can help us navigate the waters. I hope so.

Oh meant to say, I don't know if my family doc would trial me on mestinon or not... It's strange, because for a family physician, he seemed awfully sure that that's what I had... That's why he referred me to the neuro. He even gave us the webmd page to look at. I thought that was odd. I don't know if maybe it's just protocol to refer that kind of stuff or what... He said he remembered seeing a test done for it back in med school but that it was more up the neuro's alley... I mean, I'm not convinced it's MG, only because of the vomiting that I have had sometimes. And I'm not one to just have an overactive gag reflex or anything. It hits and it hits hard. But like someone said, perhaps I'm dealing with more than one thing. That would be fantastic

Jaimee, I'm being trying to "mesh" the vomiting with MG. This is all I could possibly figure out: When I get double vision in all directions EXCEPT forward (this is hard to explain unless you have had it) -- I see double peripherally to the right, upwards, to the left, and downwards. It makes me POWERFULLY dizzy. Like I have to hold on to something or I will fall down. Anyway, my mom and sister suffer from inner ear -- and when they get THAT kind of dizziness, they have AWFUL vomiting episodes -- almost like projectile vomiting -- it seems to go on and on. They take Mecl--something, well the other name is antivert, for this. I wonder IF you have double vision that makes YOU so very dizzy that it upsets YOUR stomach? The docs say that this is what happens with inner ear.

Yeah I can see where that would make sense. And it could possibly make sense of when I've had daytime vomiting. It does generally begin with a queasiness that I just can't shake or put my finger on. So maybe some of that is vision related. HOWEVER. lol there's always a "but" isn't there? It seems like if I closed my eyes, like when I go to bed, that the queasiness would go away... And at least a couple times now I have vomited repeatedly through the night. I just don't know...

I called to get the values for my labs and here they are. No clue what any of them mean, but figured there's no harm in posting them!

ACHR binding: <0.03
chloride: 102
carbon dioxide: 25
TSH: 2.330
calcium: 9.1
magnesium: 2.0
potassium: 3.9
glucose: 76
BUN: 12
creatine: .66
ratio: 18
sodium: 138
All I know is that these are "normal!"

Well, she didn't know enough to run the entire Acetylcholine Antibody panel. You should've had binding, modulating and blocking antibodies done. And did she send it off to Mayo or somewhere equally adept at the test? Quest Diagnostics is often "wrong" when running it.

http://www.aruplab.com/guides/ug/tests/2001571.jsp

3% - 4% of MG patients only have the modulating antibody, which she would know if she were an expert. I am one of those few.

I should add that different labs have different determinations of what is positive. This lab, for example, has an "indeterminate" reference range for the modulating antibodies while the Mayo lab does not.

There are other drugs that can affect those tests, like Advair or Flovent. Any steroids will. And IgG deficiency will affect them as well (they would be lower or negative if you had a deficiency and did have MG AChR antibodies).

With a disease like this, it's always best to be diagnosed by an expert, or have it ruled out by an expert. You can always have a "regular" and nice neuro follow you after that.

Anie

I don't think she sent it anywhere. They took my blood Tuesday morning and I got the results Thursday... How does one go about finding an expert? I mean, I definitely want to go to somebody who's going to figure this darn thing out. But all I know to do is go to who my family doc refers me to. Do you think my family doc could run those tests? I don't want him to think I'm a hypochondriac for finding out about this stuff... I need someone on my side.

Jaimee, Is there a reason your doc is thinking polymyalgia rheumatica?

Do you have the MRI results already?

Here is what I got from the MDA website.

http://local.mda.org/site/PageServer...&Lookup=Lookup

I don't live in your area, so I don't know of any good neuros. You may have to head up to Greenville to get an MG expert.

Hope that helps.

Annie

JohnC - Can you please start a new post because I think your response is getting lost in this thread.

I have the disk but not the result/reading. Of course when I look at the pics of my brain, it just looks like a brain... I don't really expect them to find anything there. This is the third go round.

I'm not really sure why she brought up polymyalgic rheumatica... It was just a new gynecologist, so she wasn't trying to diagnose or anything. But her point I think was that perhaps we've been barking up the wrong tree. Maybe a neurologist is not what I need after all. She was just explaining that she had had a patient who ended up having that after it was triggered by hysterectomy and that some things jumped out at her as similar... I don't know.

Sorry John, didn't mean to ignore you there! I'm not sure if anybody will do any of those tests on me or not... It seems that the neuro anyway feels that she has discredited MG as an option.

Are you sure you don't have the results. They are often required to attach them, like tuck them into the sleeve of the results. Or on the disk in a separate file.