Hi Rumpled,

sounds a bit weird that that one dr doesn't think you have a nm disease while the others do. Excuse my ignorance, but not having had a emg, does this PROVE you don't have MG, I may have to to a bit of searching.
Have just looked at a couple of sights and found that in rare cases people can have MG, but the tests come back negative for it??!! Did he mention anything like this(or am I just reading what I want into it?)

I really hope your Dr can help you out.

I wish I could be of more help, if you need to talk, send me a pm.
take care
redtail

Sorry for the delayed reply... I have been away visiting relatives (I am tired but it is nice to see my uncle).
I have had 3 other doctors think I have something nm, not sure if it is MG or not. For this doc to say it is all not NM or MG is just plain... strange.
I know all my antibody tests are negative. I do not meet all the criteria for MG...but then again, this disease seems to be different in everyone but I also did not respond to the treatments so far.
I was looking for an intelligent assessment... I did not get that. Thank you for your support - both of you.

Rumpled ~

That must be really frustrating! I hope your Doctors figure out what the problem is soon. We are all here for you if you need to vent

Kristy

So these "brilliant" docs still have no idea what's going on?

What the hell? How can they "rule out" MG and then send you on your way when you are sick? I just don't get it!

I just don't know what to say.............I can't even imagine how frsutrated you are right now.

Do they have ANY idea what you have? Anything @ all?

Please let me know if there is anything I can do or say to help.........

Erin

The guy said to look at another disease... but in googling, I cannot find another reason for choking or swallowing issues that is not muscular... I don't get it.
And now... I have shingles... so feeling rather... awful. What next!

Wow. I don't have any idea of your history or anything. I can only imagine the frustration you're going through. I do know the most frustrating thing for me and my wife was the "not knowing what was going on" stage. Google-ing on your own for symptoms, self-diagnosis, is just a recipe for worry and frustration. My symptoms all pointed to a very nasty cancer with a short life expectancy and didn't mention MG at all with online resources. Until I was diagnosed by my thoracic surgeon I had no idea MG even existed.

Have you had full upper body CAT scans with the contrasting dye injected, MRI, PET scans etc? Have you seen an esophageal expert? Has your primary doctor sent your EMG test results for another opinion?

I hope all works out well for you and you find out what is happening to you soon.

Brian

My CT for the thymus was without contrast so no... some of the abdomen with contrast (I have tons of inflammed lymph nodes there - but I am assured it means nothing - just like they do from my neck to my knees).
No PET scans... I have have tons of MRIs but not lately of the abdomen. Of the head, yes - due to the pit tumor.
I have to find yet another EMG guy... no esophageal guy (they exist! what are they called?)...
My primary care guy is so baffled by me that he ... well, he also gives me less than one minute. I have been searching for someone else that I can actually see that will help and not just give me pain pills (which if I wanted, I would be happy... but I am not).

I have already had one rare, potentially fatal disease. I am so beyond this at this point. My endo even told me I cannot have another rare disease. Like I choose this?

I'm not sure what esophageal specialists are called to be honest (possibly Gastroenterologist?), I was scheduled to meet with our local one when we were first trying to figure out what was going on with me and they just called him the esophageal specialist when talking to me about him. If your primary care guy is not looking after you, I think you're right to be looking for a new one. That's really hard to do where I live, good luck with that.

Heh... When I was given my diagnosis, my wife and I both declared "much better than the alternatives, I choose this one" Of course, I'd prefer not to have any health issues.

I have a gastro guy and an ENT so maybe I will give them a call... I am just so tired of seeing doctors at this point.
I have a couple of recommendations for PCPs so I will search them out, poor things.
I too, would prefer health. I thought after my adrenals were out that all I would have to do is manage that... no idea I had another hidden disease. Off for the medical mystery tour...

Best of luck; I hope you find your answers soon.