[jaynurse05]

Hi all! I am new to this forum, actually new to this whole blogging thing in general, as I have never really had anything to talk about before. It is kinda crazy how fast things can change. Which brings me to why I am here, I am in the process of getting diagnosed with MG. The symptoms I went to see the neuro for, came on in a matter a few days, have little to do with MG and included:
numbness/tingling/pain in my hands/feet (much worse in hands)
urinary retention/hesitancy
Swelling that would stay pitted for several minutes with just a finger press.
Increased brain fog/disturbed vision
Weakness/unsteady gait
Have had many, many other symptoms over the years, but these were the new problem
Obviously we did a bunch of tests and lab work and ended up with some strange results:
Acetylcholine receptors - positive for blocking and modulating.
ANA by elisa - positive
ANA by IFA - 1:40 negative or faintly positive
ds-DNA - 1:80 (positive is >1:10)
Sed rate - 18 normal (usually high for me)
MRI was normal
Lets just say my neuro was quite surprised by the results, not to mention a little worried (which makes two of us)! She is hoping I don't have a duo diagnosis as some of the labs are also strongly pointing to lupus. She isn't saying that I have either condition, as yet (Apparently she consideres my med list to be fairly extensive and feels it MAY be causing a false positive). Now I have to have single fiber EMG and chest ct. Also have been referred to rheumie, prolly for a whole lot more testing.
I do have some questions and hope someone might be able to tackle one or more for me.
1. have you heard of someone with false positive antibodies?
2. does anybody have both lupus and MG? Can you tell me a bit about it?
3. Anybody from the kansas city/topeka area that has any input on the neuro's in the area or the local hospitals, speficially KU Med or Research?
4. For those of you with generalized MG, what does mild respiratory symptoms feel like? I have times when I cannot lie on my back because it feels like I cannot get a full breath or my throat feels heavy, sound familiar to anyone?
5. Anybody know anything about MG and MAO inhibitors? I am on emsam, a patch form of this med and am concerned.

I know most some of these questions might not be answerable, but any attempts would be greatly appreciated. I am sure more questions will come up, but that is all I can thing of for now. I am sorry for the length of this post, but I am having a hard time sorting things out.