Naps are good. I take one every day. Best advice I can give you is listen to your brain. Don't push it, if you think you are tired well you are. Avoid heat also. I know it's winter but just store this away. My IVIG treatments go very nicely however some people have trouble. IVIG is just a slow drip IV bag. Mine take about 3 hours. I go to a infusion center. They provide snacks and lunch if you are there during lunch time. They also provide TV, movies ect. Be picky about your treatment. Don't accept poor conditions, our lives are tough enough.

One thing that bothers me as much as heat is stress. Holidays are really tough. My wife is a angel she knows more about MG than I do. She goes in to all my Dr visits and I suggest you find someone to go with you.
hang in there
Mike
PS: If you don't like a doctor find another. Some will actually abuse you. You will eventually find a Dr you trust

I just wanted to give you a few more tips. Your temp might have been down due to dehydration. With MG, drinking and eating can be a problem. Try to stay as hydrated as you can. I drink cold water and always have water by my bed, in case I wake up choking! That tends to happen when Mestinon wears off (I'm only on Mestinon, though, and take it every 3 hours, around the clock).

If you have trouble swallowing, bend your chin downward. Watch out for tough to chew, sharp, or sticky food (i.e., peanut butter).

If you do become overheated, for whatever reason, make sure you cool down right away. And take a nap, as Mike does. Managing MG is as important as drugs are. Alternating activities with rest is crucial, even on drugs.

Socializing is one of the toughest activities. The majority of muscle groups are used, and all at once. That creates a larger demand for acetylcholine than, for example, typing on a computer. Alternating use of muscle groups can help as well.

There are people who do resume a "normal" life. Some are lucky to be in remission. Did Kamniski talk about a thymectomy?

I have more conditions than MG, and can allegedly only be on Mestinon (long story having to do with not very nice neuros). I am on SSDI. If it looks as though you may need that, apply early. That process can take up to 2-1/2 years! Many people are turned down the first or second time they apply.

There's no way to tell how your MG will progress. Remain hopeful about the drugs helping you! As I said, many people do still work with MG.

Green tea, btw, does the opposite of Mestinon. Just be careful about anything you drink/eat or any supplements or herbs taken. Caffeine, for example, does the same thing (to varying degrees) as Mestinon. Too much acetylcholine can make someone worse as well. That can lead to a cholinergic crisis (too much acetylcholine), the opposite of a myasthenic crisis (not enough acetylcholine). When your drugs do kick in, you may need to back off on Mestinon.

Not an easy disease, is it?!!

Whether or not you tell your employer about this is up to you. I have found that it helps to have some simple written explanation for family members or friends when you tell them.

I like the example of muscle gas, which is what I call acetylcholine. A car won't run without gas, and our muscles won't run without acetylcholine (ACh). Normal people have enough muscle gas for their muscles to work well. MGers have only fragments of that getting to the muscles, due to the antibodies blocking the muscle receptors. Without enough gas, our muscles will sputter or not go anymore—which can be life-threatening. The more we do, the worse we become.

I can tell you that I've had MG my entire life (only diagnosed at age 41). Has that been difficult at times? Sure. Now that I'm 59, I am concerned about what my future will hold. But I still am grateful every day that I'm doing well enough to write, play with my dog, Sami, and enjoy each day.

Attitude really helps while having a disease.

I hope the IVIG goes well. Many people premeditate with Benadryl and acetaminophen (and afterward for a couple days). If you haven't taken Benadryl before, be cautious. That drug does the opposite of Mestinon. Liquid Benadryl is great, because you can titrate the amount. Make sure they do the infusion slowly. Drink plenty of water for several days. Some people get a headache. Some do get aseptic meningitis. But don't freak out about that!

Unfortunately, Mike is right. Some doctors are real brutes. Some nurses can be, too. But we don't have to be! You can always ask for another nurse or find another doctor. There are mostly good ones out there.

Good luck this week!

Annie

Wanted to give you all an update. Everything said and suggested in this thread has come true for me.

I’ve started on monthly IVIG treatments and the slow prednisone taper (current dose is 40mg). In addition, I completed a sleep study last night and the Pulmonologist said the results were moderate to severe for a Myasthenia patient. I stopped breathing, on average about 14 times in an hour. During REM, breathing stopped 57 times. My O2 saturation got down to 77% and this was considered unacceptable. Next step will be another study to fit me with a BiPAP as soon as the Pulmonologist gets approval from my insurance to proceed.

This is all taking so long and I’m not feeling very well yet, but am encouraged by all of you kind people sharing advice and information. Dr. Kaminski is fantastic, so I must also give him credit, along with my local Neuro-Opthamologist who is executing orders and treatments. For anyone looking for a top Neurologist in the DC, VA, MD area, see him!