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.

All we need to know is where you live or what major city you are nearby. Or if you don't want to, contact the MDA: www.mdausa.org

It's good to be cautious with any doctor when getting a 2nd opinion. They often get insulted by that, even though they publicly swear it's a good thing.

I live in Spartanburg SC. If anyone wants to hunt me down, I don't run very fast...

[QUOTE=Jaimee;642525]Hi all! My name's Jaimee. I'm in the process of being checked for Myasthenia Gravis after 3 yrs of misdiagnoses, theories and assumptions. I go to the Neuro Monday and really have no idea what to expect, but I'm hopeful for answers. I'm a mom of 4 little ones and this has been a struggle. I think more than the weakness, trouble and sometimes even pain, I struggle most with people not seeming to believe that I'm having trouble! I guess because they can't always see my weakness or difficulty or because they haven't seen me at my worst... I am wrestling with my attitude right now because I would love to just rub it in everyone's faces when I finally do get a diagnosis. But more than anything, I want to feel better and stronger and more able to care for my family and follow through with the things that I'm passionate about.

Anyway, I'm wondering-- What can I expect from my first appt. with the Neuro? It's been 2 years since I've been to a Dr. and the last round eliminated MS, Meniere's disease, fibromyalgia, lyme disease, and chronic fatigue syndrome... but brought up the question of Hemiplegic Migraine (w/o head pain)-- I know! Crazy!



gidday jaimee I have been diagnosed for 3 years now, I was diagnosed by an optician after been accused of being a time and health resource waster by a specialist ???
anyway when I finally got to a nuero, anti bodie test first, positive for me but not always for everyone, next test was the electric machine ??? measures muscle response , stick fine needles into muscles and watch machine?? next electro shock of muscles and measure respone or something like that ( not pleasant ) was on mestinon and prednisone for a few years but now have progressed to immuglobin and plasma exchange, rest is essential regards johnc666

Went to the GYN today and she suggested I go to a rheumatologist. Mentioned something called polymyalgic rheumatica? No clue. Got a brain MRI today. When I got to my appt. found out my insurance had denied the neck MRI... So is there a good Dr in the Spartanburg SC area I should pursue?

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.