You're not alone! I think that's the hardest part about MG. Other people often tend not to understand how hard MG is.

This article came out last year, chronicling the effects of marijuana on some people. If someone doesn't have MG, the effects would seem to be "mysterious" when they're really not!

Mysterious illness tied to marijuana use on the rise in states with legal weed - CBS News

What marijuana or the derivatives do is increase acetylcholine. Pot has the same effect as Mestinon. That's why it can be dangerous to MGers. Read that article and think about the increase in symptoms people are having! Typical Mestinon overdose symptoms. And taking a HOT shower helps! Heat increases acetylcholinesterase, which decreases acetylcholine! I even emailed the doctor in this case, but never heard back. I think they like sensationalism (and the money) more than they want to help people!! Sad.

I think looking at your diet may help as well, but you need an expert. I mean, in terms of eating foods high in nutrition and not eating foods that may exacerbate MG (nightshades, caffeine, etc.).

Doing any kind of modulating of the immune system without a specific target, a defined protocol, or proven results could be disastrous for you. Understanding the role of cytokines and other immune "players" in a disease is great, but that alone won't help you become better.

I'm sorry that you haven't had a thorough accounting of your body and systems that would benefit you. Have you written down all of your drugs, your conditions, related symptoms, symptoms that don't seem to fit within the conditions, time of day symptoms are worse, degree of impact on your body, and anything else that is going on? I think you need to be your best reporter of all of the details of your health. That might help a doctor in the future figure out what is going on to prevent MG from improving.

If an immunologist isn't doing the right tests, they can miss something. They aren't all created equally. That's why a new set of eyes may help.

Don't ever give up! I have needed help in that regard and turn to people far wiser than I will ever be, such as Matt Kahn. Or watching something that makes me laugh. Or meditating to stay in a state of love energy. There's always something or someone that can help us! But, unfortunately, we MGers need that help in the form of smart doctors as well!

I wish there were doctors out there (there probably are) who would love a challenge such as yours, who would dig into that with all of their resources, brain power, and heart, and who could further the field because of that. Wouldn't that be great?


Annie