Hi, Miss Gomes. Welcome. This is going to be a bit long but, hey, you asked!

I've had myasthenia my entire life but only found out about it in 2000, was diagnosed in 2001 and found out about the "entire life" thing after looking at my K-12 photos in 2006 (long story). So I've lived 51 years with this disease. No, I don't have it as bad as others do, however, I think that is mostly because I limit my activities. And that is a very important point to make.

If you buy more, you have less money. Same with MG. If you do more, you have less acetylcholine. Our "muscle gas" just runs out, even with Mestinon. So MG is a lot about supply and demand. If you continue to have a hectic schedule, you may need to keep adding on the meds. It's a balance that only you can figure out, with your neurologist.

I take 90 mg. of Mestinon every 3 hours, round the clock. Less when I have my one cup of coffee per day (see the Caffeine/Nightshades post). 10 mg. more when I do activities, per my neuro. I take Mestinon syrup so I can titrate doses easily. And it absorbs more easily. I noticed improvement within 30 minutes of taking it the first time. It kicks in 30 minutes after taking it and wears off about 2 hours later. You get about a good two hours of a boost in acetylcholine from it. Timing activities accordingly helps.

My speech only becomes impaired when I talk a lot, which I don't do much. I can't work and don't have kids. I'm sure you can't exactly use sign language with your kids! Although if you are having a bad day, a "game" of trying to communicate in other ways (computer, writing, etc.) would be a good way to rest your speaking muscles.

I did not have my thymus removed. Others can speak of this better. I opted not to have the invasive surgery - as did the surgeon I consulted with!

Am I optimistic? In general, yes.

This is how I look at MG. Just kidding, although I do scream about it from time to time. MG is an autoimmune disease. So, obviously, my immune system is ticked off. Because of that, I do everything I can to make it happy. I sleep as well as possible, I eat organic foods, keep stress to a minimum, take sensible supplements, alternate activity with rest, stay out of the sun (toxin), see my doctor right away when I get sick, etc. I try to concentrate on what I CAN control. Concentrating on what I can't do due to MG would make me nuts. I hate what the disease has taken from me. I hate that I cant' work or do what I love. But it is my reality and I have to live with it. I'd rather live happily with it then be all depressed about it every day - though depression is a very real component of it for me.

Learn every thing you can about MG. Go to www.myasthenia.org or www.mdausa.org Look at what drugs and foods affect it. Know that extremes of heat and cold will make MG worse. My MG crisis was in the summer, during really hot weather.

What is an MG crisis? It's when your breathing muscles get so weak that you can't breathe well and either need oxygen, Bi-pap and/or intubation. When I had my crisis, I had generalized weakness but because I hadn't been using my voice, it and swallowing issues were spared. From what you say, you would probably have problems swallowing or breathing that sent you to the ER. And that is where you should go if you have problems with those two things or generalized breathing.

If you don't have a pulmonologist, get a good one. Mine is in a hospital setting, which is optimum. When you have a crisis, it is BOTH a neurologist and pulmonologist who care for you. Having baseline breathing tests done is a very good idea. Then they can know your normal. MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure) are the tests that specifically measure how well you are breathing in and out and how weak your chest wall muscles are.

A good pulmonologist will walk you around the office with a pulse oximeter on to check how your saturation is while doing something. When MG gets worse, the pulse goes up. The heart is pumping harder to get you enough oxygen. Then when you stop moving, the pulse goes down, as does the oxygen saturation. Then your blood gases will look like you are hyperventilating and uneducated doctors will say you are anxious. You aren't. You can't "exchange" oxygen and carbon dioxide. It's at this point that CO2 starts to build up and you get worse quickly. Too much info?

If you can afford an oximeter, I HIGHLY recommend getting one. Right before my crisis, my O2 stats went down to 94% and would not go up no matter how much I rested. That is a huge warning sign. Others are sudden shortness of breath or any other weakness, not being able to use a muscle like being able to grip something, etc. Anything odd should be reported to your neuro RIGHT AWAY. Don't wait. It's not stupid to call. And if you are getting worse, get to the ER right away. Dial 911. Don't drive yourself.

A support system of family and friends helps a lot. So does a psychologist. Anything like this that changes your entire life needs "management" and as many coping skills as you can get.

Because you had a thymoma, they may want to ask your neuro to run the striated muscle antibody test on you yearly. It can reflect the little bugger coming back. Yes, thymic tissue can grow back.

I'm sure I'm forgetting a number of things. Just keep reading and thinking and TAKING IT EASY! It's a lot to take in and adjust to. If your kids don't understand this, just find a good metaphor to explain it to them. Like gas in the car running out (we run on 1/3 tank every day). Kids are smart, they'll probably get it faster than adults.

I hope this helps. You asked lots of good questions. This is a great group of people who will support you in whatever you need.

Annie