You're welcome, Rob. Glad to help.

I'm sure it's frustrating, and a bit scary, to be so far away when a loved one is sick. The first few months while someone is getting used to MG is when they need the most support.

As odd as this is going to sound, managing MG with rest—and not overdoing it—is one of the best "treatments."

When I went into a crisis in 2005, I had pushed myself way too far. That's something no MG patient should do, even on drugs.

"Newbies" need to give themselves time to adjust to what it means to live with MG. It isn't like cancer, for example, where you have treatments and (hopefully) then it's gone. MG is for life.

Yes, even while on other treatments such as Pred or Imuran, MGers can still go into a crisis. MG is not the same for everyone. If your Mom's antibody titers were high, chances are she might need more medications than some people. There is no algorithm to figure out how your Mom will do, unfortunately.

MG can be mild in the morning and more severe at night. Or it can be mild for months and then worse (i.e., in the summer). Many MG experts say this: "The only thing predictable about MG is that it's unpredictable." Great, thanks.

There is no such thing as "trying" Pred. Again, once a patient is on it, it's nearly impossible to withdraw. Many MG experts do save it for a crisis instead. It's important to wait until speaking to an expert before making any long-term care decisions. HOWEVER, if she is getting worse (as I described), more treatments might be needed in a hospital setting before seeing the expert.

I cannot emphasize enough the serious health issues associated with Pred, especially for someone elderly. Consider the issue of quality of life as well.

Some of the best tips are: Stay coolish. Get any infections taken care of right away. Get enough sleep. Don't overdo. Don't even sort of overdo. Socializing uses the most muscle groups, so nap after doing it. Put the chin downward while swallowing if that is an issue. If the neck is weak, use a U-shaped pillow around the neck. Prop oneself up with a couple of pillows while sleeping to help with breathing. Don't stand when you can sit, don't sit if you can lie down. Take a nap when the body says to. Say "No!" when activities would be nice to do but would make the body crash.

Most of all, report ANY worsening of MG to a neuro right away. Or report to the ER via 911 if progressively getting worse.

The thing about a crisis is that it takes longer to recover from that than becoming weaker from one activity. And how long it takes to recover from even an activity can be tricky.

I become worse the day after going out. But I become much worse on the second day, which I call "2-day payback." So we have to also be aware of our bodies on a daily basis to see what we can do and when we can do it. I usually only go out to do anything once a week, but I can only take Mestinon. I'm on inhaled steroids for asthma, which Mestinon caused, so that helps too.

Your Mom has to be aware of all of the variables of this disease. Don't be scared, though!!! I've had MG my entire life. I've only had one crisis. Although, I've had dozens of exacerbations. That's a "near crisis." I've had some almost crisis' too. But those were operator error!

Again, doing too much means the body is going to tank us!

Get her medical records. You (and she) need to know what the antibody levels were. And because there is more than one, that's important. There's also the MuSK antibody. And they are discovering that there are more of them (no tests yet).

I forgot to say that a pulmonologist is invaluable to have. They work with a neurologist in a hospital setting when a patient has a crisis. What they can do is to take baseline pulmonary function tests. And if a patient becomes worse, they can compare results. They can also do an arterial blood gas or an overnight oximetry, to see how a patient is doing at night. Everyone's muscles become weaker while sleeping, but ours can become even worse.

I have an oximeter (Nonin brand) to monitor how my saturation is. It has been helpful through the years to see any trends. For example, before my crisis, my O2 was at 94 percent while lying down (not my normal). It was also dropping lower. It's an inexpensive thing to have. I like the Nonin GO2, but there are other brands.

The breathing tests that a MGer should have, beyond the regular PFTs, are MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure). They show how well we are doing at breathing air in and out. Yes, breathing is involuntary. But with MG, chest wall muscles can become weak and breathing is impaired. For example, my normal MIP is about -84 (that one is expressed with a minus before it). In the hospital, it was averaging -24. -20 is the time when a BiPap or intubation is started.

A neurologist is not a pulmonologist. Vice versa. I work with both.

A MGer can also have a peak flow meter to see how they are doing at breathing out. A pulmonologist could probably give her one.

I don't want to overwhelm either of you! But I am so grateful to know this information, and more, in order to manage my care.

Being elderly can make learning all of this harder, though not with everyone.

Ask LOTS of questions. Maybe even record the next appt. (and let the doctor know you're doing it!). Your Mom could replay the recording if she can't remember what was said. It's hard to take it all in at first!

Annie