[findinghope06]

I just found out I have MG a little over a week ago though Ive been suffering with symptoms for quite some time.

I really dont want to take medicine my whole life. Im only 24 so I want to try my diet first but Im having a hard time finding recipes that are MG-friendly.

Do you know any or where I could find a good cookbook/website with recipes? I cant seem to find anything.

Thank you!

[suev]

Welcome Hope!

I'm not one of the folks here who believes that there is a diet or even a supplement regimen that will 'cure' or even significantly improve MG. That said, I do believe that B12 supplement is a good idea.

I rely on Mestinon alone and have good days, not so good days, and absolutely fantastic days! I just never know ahead of time what kind of day to expect....or really why!! Though there are some insights one does acquire (like heat, stress, being overtired = bad day).

Check out Aries51 thread about 'symptom free without meds' - - but be sure to read the whole thing. There are some folks who really get into the supplements, etc. Whatever works for someone is great...but it is up to each of us to do our own research and to partner with our docs.

I would strongly encourage you to experiment very carefully if you are inclined to try anything you read about anywhere on the net. Just because someone believes that they have found a solution - doesn't mean it will work for your body.

Good luck in your search.

Sue

[AnnieB3]

Hi, and welcome.

That's really young to have MG and I'm sure you are overwhelmed. It'll take a while to get used to being sick, let alone learning about MG. I don't know how much you know, so I'll just put some on here for you.

You may not want any drugs but your MG may have other ideas! It is a highly unpredictable disease. I have managed to do only Mestinon and alternating activity with rest, which works most of the time. I can't do the other drugs unless I get much worse. If you push too hard, MG will push back. Your muscles can get so weak that you can go into what's called a "myasthenic crisis." It's when you either can't swallow, breathe well or move due to muscles being weak. It's an emergency and always means you should call 911. You can never know how badly things will get or how quickly. Having one was enough for me to not push my body too far. It's not fun.

I agree with Sue about diet, in general. B12 is necessary to have enough acetylcholine. I won't bore you with the biochemical details! Dr. James Howard said that a B12 deficiency is common among people with autoimmune diseases for a variety of reasons.

There are foods which can make MG better because they increase the amount of available acetylcholine (ah-seat-ill-co-lean) in the body (which I'l refer to as muscle gas). We don't have enough of that neurotransmitter getting to our muscles due to the lack of muscle receptors. There is an enzyme called acetylcholinesterase (AChE) whose job it is to "clean up" after our muscle gas. Mestinon, and some foods to a lesser degree, keep that enzyme from mopping it up so we can use more of it for longer periods of time. The nightshade foods (potato, tomato, peppers, tobacco and eggplant) and caffeine are "cholinesterase inhibitors" as well;meaning they do what Mestinon does - keeps the enzyme from mopping up the muscle gas. Sorry for making all this sound like you are in elementary school! It's complicated stuff.

The problem with foods is that they are not formulated and there's no way to tell how much inhibition of the enzyme you are getting. And there simply aren't studies out there that have been done on them in relation to MG. If you are taking a lot of Mestinon, for example, they may push you into what's called a "cholinergic crisis." It's when you actually get too much muscle gas and get weaker. Too little and you get weaker and too much and you can get weaker. Crazy, right? I hope you have a really good neurologist because that will help a lot.

I take 90 mg. of Mestinon every 3 hours, round the clock. I have absolutely no side effects from it. Some people have significant GI upset. Why? Well, it increases acetylcholine and that is one of the three things you need to make stomach acid (gastrin and histamine are the other 2). Some people take antacids while taking Mestinon, though an antihistamine would work too but it is a drug that does the opposite of Mestinon and may make MG worse.

You can find some more info at: www.myasthenia.org

It wouldn't hurt to try Mestinon. Usually doctors start patients out with smaller doses, like 30 mg. The drug is available in tablets and syrup (which I take). It's also available in a "Timespan" tablet which is a time-release formulation that some take at night. The dosing during that time can be iffy and some patients don't do well on it.

I certainly understand not wanting to take drugs at your young age. But what if taking one would prevent you from getting worse and having to take others?

I'm afraid there aren't any "recipes" to make MG better. At least not food ones. Getting enough sleep, reducing stress, telling your doctor right away when you get a cold or flu, etc., staying out of the heat and lots of other things will help you keep MG as good as possible. Eating right helps too, including organic, whole foods, lots of good water and sensible supplements.

Check with your internist about anything new. Do you have shortness of breath or generalized weakness? If you get short of breath, it's very good to have a pulmonologist whom you can go to so your breathing can be assessed. Then when you get worse, they can know what your "normal" is.

Ask lots of questions and don't be shy about calling your doctor or seek out help if you get worse. I hope you will figure out what helps you to feel as good as possible.

Annie

[findinghope06]

Thank you for your responses and concerns. Youre both right and I have a lot to learn, experiment with, etc. I feel very overwhelmed about it all and am itching to talk to my neurologist on Tuesday after my CAT scan. I have so many questions and so many hesitations. I am tired a lot. My muscles are killing me from yesterday (all I did was walk a bit) and right now I am getting off of nortryptline (i probably spelled that wrong). So I am experiencing dizzyness, light-headedness and shortness of breath. It hurt to breath deeply yesterday too. Lots of chest pain when I try and swallowing isnt too bad right now but I can definitely tell its harder than before and I seem to hit something when I swallow too though there is nothing there.

Thank you for your input and I will take it all into consideration. I need the support right now and just knowing there are others out there who can help.