Abby, I've been doing some thinking and have some questions for you! Guys, if you could keep this on topic and for Abby only, that would be appreciated!

Okay, what's your ancestry? Is it Northern European?

You don't have ptosis, right? Has a neuro-ophthalmologist evaluated you?

Have you had the testing for LEMS?

You didn't have a muscle biopsy, right?

They've checked your CPK, right?

How do you feel after you eat turkey?

Have you ever been on Albuterol or a similar inhaler? Did it ever make a difference in symptoms if you were?

What about tonic water? Do you ever drink that - which you shouldn't if you have MG - and, if so, any effects?

What happens when you have anesthetics, like dental or for surgery?

Mestinon doesn't work for you. You get worse when you've been still for awhile. You don't seem to get as sick as others do (with colds, etc.) even though you're on an immunosuppressant. Although, that could simply mean that the flu isn't mild but your body does not "show" you that it's bad. Kind of like how Pred masks infections but a person may have a very high sed rate. You might want to try checking that in the future.

I'm wondering if you don't indeed have a CMS, like a Rapsyn or Agrin mutation. Possibly Dok-7.

http://neuromuscular.wustl.edu/synmg.html

As you know, there is pre-synaptic, synaptic and post-synaptic issues that can occur in all of these "syndromes," among other things. I wonder if your muscles have a post-synaptic problem. The fact that you get worse after you've been "still" for awhile is intriguing.

Have you ever had protein powder shakes and do they have any effect on you at all?

http://archinte.jamanetwork.com/arti...ticleid=552396

http://www.macalester.edu/psychology..._receptor.html

And to make you nuts and show you how many things can go wrong to produce neuromuscular diseases . . .

http://tools.autworks.hms.harvard.ed...id=2197&page=3

I forgot what else runs in your family. Was it ataxia? Epilepsy?

http://neuromuscular.wustl.edu/mitosyn.html

I really think there is a puzzle here that needs solving. Sure, you could have "atypical" MG, whatever that means since we're all different. But you don't seem to fit the classic set of variables. And you might have more than one thing going on.

I wanted to at least have a conversation with you about "what ifs." Sure, your Graves could be kicking up but what if that's not it? Maybe you do have just MG and you think you're superwoman, do more and are surprised when you get worse.

Do you think the Imuran has helped? Do you have any "end points" that can "prove" that? It's more easy when someone has ptosis to prove if a medication is working. Is your breathing better on it?

What got me thinking about all of this was a stupid article on the flu and discussions about Trypsin and plasminogen. My brain works kind of oddly.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2446977/

Okay, enough. This might be too much gobbledygook but I don't think you can rule things out before you look at all of your symptoms, history, test results, influence of food/drugs/other diseases and pattern of weakness. Though you've already done a lot of that!

Anyone else have any brilliant ideas for Abby?


Annie