Sorry for the patchy story. But the mestinon is not currently being given to me anymore. The first Neuro guy ran a million test and only came up with what I did not have. Once he ran the antibodies test and it was negative, since the swallowing did not return totally on the drug he said it was not MG and washed his hands of it. I worked with my Internal Med doctor who was convinced it was some kinda of autoimmune and we got a second Neuro for his advice. He ran the electrical study and increase the dose of mestinon. I failed the test but not to his preference and he too said it was very strange to only be making me feel very weak with fatigue and only causing swallowing issues and washed his hands of it. Both of them basically wanted me to go to someone else. My internal med doc said mayo may be my only option here because Memphis has a brain drain on doctors with specialties on such rare disorders. All of this has played out over a year.

Its very frustrating to read the about MG and not really see alot that just have the swallowing as their main complaint (with fatigue). But nearly 60k in tests and hospital stays and we have ruled out everything else it could be. My biggest fear is those drug cocktails in pill form. I have not swallowed a pill in 10 years (since this start back then in much milder forms). gastro ruled out everything that could prevent that and was the ones that basically said this is all in your head and you need some good psych meds.

I know it sounds very strange but I am ready to put a name to all this and start working on something that can help before i end up losing my job and private insurance. This episode was the worst ever and put me out of work for 8 months, so they will not allow me another extended leave like that.

i know it may be long shot but does anyone else have a peg tube? I really dont like it but its my new best friend i guard with my life. I would love to find out if anyone has any luck with mickey buttons as opposed to the bulky peg tube.

christopher