Hi, bchgrl. Isn't it fun to have a disease fall in your lap? Not.

I'm glad the tumor was benign. You are lucky to have had such fast help!

A tumor, surgery, recent onset of MG, and steroids can all combine to make MG worse. And the worse MG is, the longer it will take to recover. So give your body time to adjust.

I'm really surprised that you are doing PT if you are so bad, especially given how badly you do afterward. If you are in an unstable situation with MG, they really need to give you some more IVIG. Please call your neuro!!! These are symptoms of nearing a MG crisis.

120 mg of Mestinon at a time can (possibly) flood the neuromuscular junction and cause a cholinergic crisis, where there is too much acetylcholine going to the muscles. Sometimes a lower dose, more often during the day is better.

Mestinon kicks in after about 30 minutes. Two hours after that, the drug wears off. So we get about 2 hours of use out of one dose. Some people take Mestinon every 3 - 4 hours. Please discuss all of this with your neuro, and don't make any changes before doing so.

To answer your questions . . .

1. Yes, MG can come on very suddenly. Or it can come on slowly.
2. No one can predict how MG will progress. You might need another medication, such as Imuran or IVIG.
3. No one can predict the effects of a thymectomy either. About 1/3 improve, 1/3 stay the same, and 1/3 can go into remission (at least that's from studies about a decade ago).

I know that this is tough, going from someone who can do whatever they want to someone who has to manage energy on a daily basis. Learning everything you can about the disease helps.

A person with MG can become temporarily weaker after an activity, such as washing dishes. Resting or taking a nap after doing something helps. And I mean lying down, not sitting. The more someone does, the longer it will take to recover. And those effects can be cumulative.

There are some people on drugs that do perfectly fine, and live a relatively normal life. But some are not so stable. Finding the right mix of drugs and managing MG with common sense and rest will help.

Make sure you have enough sleep (recharge your muscle batteries!). See a pulmonologist to assess your baseline breathing. Neuros and pulmonologists work together in a hospital setting. A pulmy can assess your breathing if you think you are becoming worse, and do an arterial blood gas and O2 readings. Drink lots of water, eat good food, you know the drill. Do everything to keep your body/immune system happy.

Going off of steroids can be tricky. Watch for any signs of increased weakness or signs of an adrenal insufficiency. Make sure that the withdrawal is not too sudden. Just work with your doctors and let them know of any increasing weakness. With MG, the best thing to do is to seek help sooner rather than later.

You need to be patient. Give yourself time to adjust to this new reality. Read up on MG—there's a lot to know about it, including some drugs that are contraindicated.

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Muscular Dystrophy Association

Most importantly, I think you need to call your neuro. You sounds as though you are not stable yet. Don't hesitate to go to the hospital or dial 911 if you have symptoms of a MG crisis (not breathing, swallowing, or moving well).

What else do you need help with?

I've had MG my entire life. I won't lie and say that living with the disease is a piece of cake! But a "new normal" is doable. I wish I had a crystal ball to say how the progression of your MG will go. Everyone who has the disease, much like Multiple Sclerosis or other AI disease, is different.

I hope you will go into remission and be fine. But even then, MG can fool us! Just take it easy, and be good to yourself.

Annie