I really appreciate you guys
I think the reason she's doing the head/neck MRI (yet again-3rd time now) is that it's been 2 years since I've had them done? She said something about she feels like we're still at a stage where we need to rule out the "major" things. I guess the only thing that bothers me about that is that I feel like if we rule out the major things (MS-again) then I'm supposed to be thankful I'm going to live and not care if I can actually treat what I have! I don't think she ordered the musk antibodies or the chest MRI because she really doesn't think I have MG... You know the whole thing about not feeling normal in the morning... NO idea. Perhaps I don't have that, and that's fine. But I'm not doing this searching and going to doctors again just for kicks and giggles. I'm ready to get treated so I can at least feel like I'm doing all I can do to improve my health and be there for my family and live a full life. My family doc already said that if I go through her and I feel like she's not taking me seriously or like she's brushing me off, he'll refer me to someone else. He said when it's gotten to the point where I have times I can't drive or pick up my 3 year old, then we need to find out what's going on. So we'll see. I go in this morning to give them blood and an MRI later this week...

Got my labs back and all is "normal." Guess I should be feeling better then huh? I go for the head/neck MRI Monday. I don't really think they'll find anything either. I've already done it twice before. Don't really know where to go from here. I just know I can't accept a diagnosis of fibromyalgia, a pain disorder that they can't treat since I don't have pain. Stupid doctors. My husband wants me to go back to my primary and ask to be referred to someone else. I just want to be done.

I hope you get a diagnosis soon.

I wanted to let you know that I had morning weakness due to MG until recently, now that my symptoms are under control (but not gone). I think that when MG is bad you never really get rested enough to feel strong, even in the morning.

Since your symptoms sound like MG and the doctors haven't figured anything else out, will they will trial you on Mestinon?

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!"

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.