Annie, I love what you say about letting the harmful things roll off your back like rain. I was just telling my husband that I strictly ration my emotional energy. If you're on a boat with limited fresh water, you're not going to use it for, say, a water fight. You'll save it for washing and drinking. If you're really short, you'll skip the washing. If you're really, really short, you'll drink less than you need to.

I have seven kids. They need my emotional energy. That means I don't squander any of it on stuff that makes me use up all my gas revving my wheels while I'm stuck in the mud and not going anywhere (wow, this must be Mixed Metaphor Day!). For me, that means politics. Sorry, folks, I'm excused! I have an illness that means I can't participate in politics. For other people, politics might be an energizer, but not me.

Now, as for "reasonable expectations": here's the thing. There are a lot of long-term treatments for MG that have bad side-effects. I'm taking Imuran. If I didn't believe there was a somewhat substantial chance that it will eventually help me, it would be foolish to take it. I need some information in order to balance the risks against the possible outcome. Right now, my judgment--to the best of my knowledge--is that the risk is worth taking. For me. In my particular situation.

So there are practical reasons like that for trying to figure out what sort of success rates such treatments have. But there are emotional reasons, too. Like we've been talking about, we have to avoid both false optimism and false despair. Hope is healthy, but not false hope. I understand that MG is not a predictable disease. But there is still a difference between cultivating a healthy hope that is based on knowledge, and sticking a smiley face sticker over my face and pretending that everything's fine, and that anyone who's suffering just needs to cheer up. Like Jana said, it's a tight-rope we're walking.

Abby

Thank you Annie! I just want to add one more irritant to the list. My nueros ( the two I've had) always want to know what "percent" better I am. Better than when exactly? Yesterday, last year, before I got sick... Let's just say these are the things I have been able to do recently and the consequences for doing them.
Now if we can find a way to make the literature explain more correctly our disease...
I also wanted to talk about telling the new MG ers the full truth about it... It took my nuero over a year to tell me that he was hoping I would get back to normal, but by this point, he thinks this is as good as it's gonna get. Now why couldn't he answer that question the 20 times I asked him what can I expect for the future?
Jessica

Thank you, Annie! (And everyone else here, too!)

I'm of the opinion that a suppressed immune system is what causes cancer (and obesity, diabetes, arthritis, etc.) - but I'm not a doctor/researcher, so it's just an opinion. Unfortunately for people with MG, it is a "damned if you do, damned if you don't" scenario, since we have to take immunosuppressants to slow the progression of this disease.....

We do need to remember that doctors are human, just like the rest of us. And only 600 new cases of MG are diagnosed in the US each year. A doctor will only see us for about 1/2 hour every few months, so they have no way of knowing what is going on day to day, and they are usually "comparing" us to other patients in their practice who have MG.

I told my neuro that I was noticing "balance" problems, so she told me to walk down the hall. Then she told me that "balance" wasn't really an MG symptom/problem: "Those muscles aren't affected by MG."

So I had to clarify for her - what I meant was that I had noticed that it took me longer to "recover" whenever I would stand up, turn quickly, etc.; my muscles weren't responding as quickly as they used to. It wasn't that I was falling over/down, it was just that my body was taking longer to respond to my brain's signals to right myself because my muscles weren't working like they used to.

And she was recommending exercises to "strengthen" my muscles. WTF????? My muscles are VERY strong, but I have to conserve my energy - and you're telling me to EXERCISE?!?!?!?!?!?

But our doctors (and everyone else, really) don't truly understand how utterly TIRED our muscles are, and how just a little bit of exertion can sometimes wipe us out for the rest of the day (and how exercise makes us WORSE, not better). Or how we never know from day to day how much energy we are going to have. Or how frustrating it is to not be able to plan in advance any more, because we don't want to disappoint anyone.

That's why this forum is so very valuable - it lets us know that we aren't alone in what we are experiencing. I appreciate each and every one of you - you have helped me (and my family!) so much since my diagnosis!

Teresa, are you seeing a regular neuro or a neuro-opthalmologist?

ALL of my neuro docs seem to realize that loss of balance IS an MG problem. When I am having trouble (muscles/weakness), they have me do the "try to walk on toes and walk on heels" thingy. AND, my neuro-opthal guy said that the double vision I am having is messing with my balance, too. Apparently, I have NOT one, but TWO sets of muscles not working properly........so, one eye's view of the world is "tilted" -- making me feel like I have vertigo.

I dunno. I think we need some kind of virtual program to let neuros see what MG is REALLY like!!

BTW, I soooooooo agree!!! MG forums and groups are the best!! To think of having to figure this out on my own???? NO WAY!!!

What a great idea.

Every doctor knows that MG patients are prone to falling. Well, isn't losing your balance is exactly the same thing as falling, except you manage to catch yourself before you actually fall? Why isn't that totally obvious? Of course MG can cause balance problems! Balance is achieved by contracting different muscles. If those muscles are weak, balance will be bad.

My first false diagnosis was an inner-ear virus. Boy, was that ever off the mark. As for "those muscles aren't affected by MG": it's this mistake that delayed my diagnosis by about a year.

My doctor says this about exercise: you can't fix MG with exercise. But if you don't exercise at all, you will decondition your muscles, just like anyone who is sedentary. Exercise, if you can tolerate it, won't fix the weakness caused by MG, but it might prevent the weakness caused by deconditioning.

How much exercise an MG patient can tolerate without using up the energy he or she needs just to do things like get to the bathroom--well, that varies wildly from patient to patient.

Abby

My doc is "big" on exercise -- and has been since the beginning. But, he trusts me to know IF/WHEN I'm able to handle walking/the elliptical machine. He tells me that IF I don't maintain muscle mass, I could end up in a wheelchair somewhere down the line. Of course, I HAVE seen for myself that I LOSE muscle mass during each exacerbation. After each exacerbation, it is a BOOGER building back up. It takes WEEKS/MONTHS to get back up to walking a mile a day. BUT, I do it. Cause, I want to do everything I can to remain ambulatory. The first walk after coming out of an exacerbation just about kills me -- I moan, groan, and WHINE -- and this walk is only maybe a 1/10 of a mile. But, each day gets to be a little easier.

I think that some neuros are on the exercise "kick" because of this clinical trial:
http://clinicaltrials.gov/ct2/show/NCT01047761

I think that some neuros are on the exercise "kick" because of this clinical trial:
http://clinicaltrials.gov/ct2/show/NCT01047761[/QUOTE]

Look at one of the exclusion criteria, in this trial-

myasthenia gravis exacerbation in past 3 months.

Which means that it is not clear how safe exercise is for a patient with an active/unstable disease.

I wonder HOW MANY of us there ARE who haven't had an exacerbation in the past 3 months?

Might be slim pickings for this trial.

When I lost bladder control, I was told mg doesn't affect those muscles. My response was that last time I checked, I had control over whether I peed or not (sorry for the bluntness) and he got a funny look on his fact and agreed with me. He was thinking strictly of the bladder and kidneys and I don't have control over them, just the muscle that controls the flow of urine! Sometimes, they speak before they think!