Hi Christopher, Make sure to do a google search for different forums to get information from many different MG'ers.
Also, make sure to check out the national Myasthenia Gravis organization at
http://www.myasthenia.org/

I know many have or had problems getting a diagnosis. I once heard an MG expert explain, that doctors want to see a Black and White result, mostly because the meds they give us are very serious, and they don't want to give someone these meds who may not have MG, and of course there is always the law suit issues.

Have you've seen an Myasthenia Gravis specialist, or a Neuro Muscular Specialist. If you haven't, you can find that info either at the web site above, or throus your local MDA. Either are usually more than willing to help.

One of the very things that sent me to the doctors was swallowing issues. Choking became my life, I don't miss those days at all!

Way before the Swallowing issues started, my legs would give out, I'd drop things, fall easily, so tired all the time.

Please feel free to pm me anytime you want. I'd be more than willing to help in any way I can.
Also I have many friends on facebook with MG. People who've had MG for many many years. Let me know If you'd like an introduction.

Best of wishes.
Remember "GOOGLE" and gather as much info from as many MG'ers as you can, from different place. Also, your MDA may know of a support group close to you!.
Love Lizzie
P.S. have you been tested for Narcolepsey? Many symp. are the same as MG. Or like me you could have both.

I have seen two neurologist and both were not really comfortable giving me the diagnosis. i go to mayo clinic in aug (a year after this all started). i read on some of the forums that mestinon if given to a non mg person will make them sick. i can take up to 180mg and not get sick at all but feel slightly better for bit, but it does not drastically improve my swallowing. i eat fine when i get up, gets worse as day goes on. i have periods of weakness really bad. cutting grass in heat makes all this worse. not know really bugs me i guess so thought i'd see if telling my symptoms to those that have it helped me in feel like i'm heading in right direction by seeing the MG specialist at mayo

It certainly sounds as if MG is a strong possibility. Unfortunately, it is a diagnosis that is arrived at by ruling out just about everything else. The fact that you are able to take such high doses of Mestinon would suggest that you are looking at an MG diagnosis.

Many doctors will tell you, "You really DON'T want to have this" (as if they think that we really WANT to be sick), but they don't take into account that KNOWING what we have is half the battle. Just knowing that it ISN'T all in our heads - that we have a name for what has been causing all of our symptoms - means having a definitive "jumping-off" point from which all of our future medical decisions can be made. That data point is HUGE. I'm not sure that doctors "get" this, unless they have been in a similar position themselves.

This is a great group, with lots of information and really nice folks. I hope that you get some answers really soon!

Boy Teresa, I feel like I'm stalking you, but again, good advice.
Christopher, If you can take up to 180mg of mestinon, and Not get sick, but feel a little better for a while, I'm going to go out on a limb and say, "sounds like MG to me as well" "I'd be surprise if you didn't have MG"
Hopefully they'll do a sleep test on you as well. Make sure to tell them about how much you sleep, and such. Many people with MG, also have Sleep Apnea. I think it has to do with weakened muscles.
Also, you may not know this, but Mestinon can be like taking an aspirin for some MG'ers. It works a tiny bit, but not doing the job, you may need a cocktail of meds. And that can take a couple years to work out what is the right combination for your body.
Most MG'ers have to take a mix of something like, Prednisone, CycloSporine, Provigil, or drugs like Cellcept, Imuran instead of CycloSporine.
If they gave you Mestinon, then that's good news, in that, they are leaning heavily towards MG. It's not a med doctors just hand out to cover all possible diagnosis, it's pretty direct. (except for dysautonomia, and even then, it was just a trial thing, I don't know much of any other medical issues it would be prescribe.
Best of Wishes
Love Lizzie

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