So, I'm still a newbie both to this community and to the realization that yes, I really do have MG. But over the last year of seeing my neuro, I've learned some surprising things. Maybe the most surprising is that "mental fatigue" is a symptom (of various things, quite possibly) that is actually recognized in the field of neurology. After hearing that from my neuros, it was important for me to discover that there is at least a small research literature on mental fatigue in MG. In my own experience, mental fatigue (sometimes called "cognitive fatigue") and physical fatigue are pretty inseparable.

I would love to hear from others about this, both because it's validating and because it is the combination of mental and physical fatigue that has made it impossible to continue working full-time.

Finally, this question— is this the kind of online group that would be bored and irritated by a discussion of academic publications, or one that thrives on them, or is it somewhere between?

Hey, 2Fatigued.

I think there is a spectrum of what people like to talk about here, which makes things interesting. As far as I'm concerned, I enjoy medical research and have done that since 1995. Alice used to post here, and is a doctor who has MG. Some people like to share coping strategies. Others like to talk about what food to eat with bad bulbar muscles. There are plenty of "boffins" here and you'll find that people are very savvy about MG.

Acetylcholine, for example, is essential for mood (and brain function). Too much and someone can feel depressed. Too little, and someone with MG is weaker. Acetylcholine is also essential for producing stomach acid, which is why some people with MG have such bad GI issues when they take Mestinon. If you ever want to know how a drug affects MG, just search "acetylcholine +drug name."

New evidence suggests that there is an underestimated inflammatory reaction in MG (look up HMGB1).

In 2007, I uncovered that caffeine, also a cholinesterase inhibitor, has similar effects to Mestinon. If someone drinks too much caffeine, they could have overdose symptoms if also on Mestinon. Drinking too much can make them feel more tired or weak.

As far as that mental fatigue question, I haven't seen definitive answers as to why MGers have that component when they become weaker. Researchers are fairly sure that it has to do with the overall demand of acetylcholine. MG can literally put someone without enough ACh to sleep.

If we use only a few muscles during the day, for example, the fatigue may not be as great. Activities such as socializing use nearly all muscle groups. The mental fatigue (and weakness) is far greater then. Add heat to all of that (an outdoor event) and we don't stand a chance!

Heat increases acetylcholinesterase (AChE), an enzyme in the body that mops up after ACh does its job. Extremes of heat and cold increase that enzyme and, therefore, decrease ACh.

I have personally always wanted to know why something is happening in the body, not only that it is happening. Some people find that interesting and others can't stand hearing about it! I share what information I know anyway, in case that might help someone.

Consider yourself validated. There are heaps of medical articles and other sources (biochemistry) on what happens in the body with MG. And how ACh affects other neurotransmitters.

MGers aren't lazy, or whatever label those who don't understand MG want to put on us. We literally can't move at times. Or think, swallow, or breathe well. And the only things that will help that are rest/naps/sleep, cooling down or warming up, and having better treatments.

People can live a "relatively" normal life with MG, if they can find the best balance of drugs and managing activities with rest. There are some of us (like me) who aren't on drugs other than Mestinon (complicated) and need to be extra careful every day of what they do. I can't work. But I know people who do. So there's always hope of a fairly normal life.

And some people with MG take Provigil, which essentially has the same effect as caffeine but with a predictable dosing. Studies have been done comparing those two things, stating that they are basically the same but that one is natural and one is a drug.

This is probably more than you asked for! I hope that it helps.

Annie

Search in PubMed with "myasthenia gravis cognitive fatigue."

Fatigue in myasthenia gravis: risk factors and impact on quality of life. - PubMed - NCBI

Fatigue in myasthenia gravis: is it more than muscular weakness? - PubMed - NCBI

Effects of napping on neuromuscular fatigue in myasthenia gravis. - PubMed - NCBI

Clinical neurophysiology of fatigue. - PubMed - NCBI

On the early fatigue of ocular muscles.

Neuromuscular transmission failure in myasthenia gravis: decrement of safety factor and susceptibility of extraocular muscles. - PubMed - NCBI

Thank you, Annie, for this very informative post on mental fatigue. I have noticed it, also.

My response is not going to be scholarly, but I have noticed that my mental fatigue acts like my other symptoms. I am better at the start of the day, and I get worse with my alertness and mental focus at the day progresses and I get more tired. So, if there are things I need to do which require concentration and thought, I try to do those things in the morning and get them done right away! If I attempt to do them in the late afternoon or evening, it usually doesn't go very well. I'm just too tired, and it's a lost cause. Some days I am just too tired and having too much trouble with my symptoms to really do much of anything, and I have to take the day off from everything. It's just the way it is. It's hard when I have multiple days in a row like that, but I don't know how one fixes it. I hope things will gradually get better with time, but that's the way things are for me at present.

Best wishes to everyone,
Erin

Erin, I so appreciate hearing from you in regards to your experience with mental fatigue!

By the way, I am not using my real name here, but rather "2Fatigued." I was discouraged from using my real name when I joined NeuroTalk. For me it makes sense to write anonymously, especially in case someone from,, say, my Longterm Disability insurance company found some nasty way to use my posts against me. (I know that sounds paranoid.) I'm not assuming, by the way that "Annie" or "Erin" are your real names.

But Erin and Annie, just having someone else's experience against which to compare my own is WAY helpful.

Thanks!

I think many people use pseudonyms. I would prefer if doctors couldn't track our every word on the forum. They tend to become offended enough when we speak openly!

Yes, thanks, Erin. I worry that you are having such persistent issues though.

I didn't really relay my own experiences, did I?! In order for me to be active later in the day, I take a morning nap after breakfast. If I don't, I'm useless for the rest of the day. But, again, I don't take anything but Mestinon. Everyone is different in how they cope with that persistent fatigue.

Driving while MG is bad is similar to driving drunk. Response time is reduced, fatigue can alter reflexes, weakness can make holding the arms on the wheel harder, legs might not push as hard on the gas or brakes, and double vision causes all kinds of problems! I won't drive if I'm not up to it.

I'm lucky that I don't have swallowing issues too often. But I don't socialize much. When I have what I call an MG choking attack, that can be so bad that I strain my back muscles (like I do when I have pneumonia). You never know what muscles will become weaker, thereby adding to the overall fatigue.

Even with treatment for MG, there will be some level of mental fatigue. And physical too. Unless someone is in remission, MG is still exhibiting some signs of existing. That's why we still need to alternate activity with rest. MG is unique in that need, even though some other diseases do cause cognitive issues or sleepiness.

Listen to your body. That's the best way to know what will happen next. I can tell when I'm in a downward spiral and will need to go flat soon. And if someone wonders why you are kind of out of it, ask them how they would feel coming out of general anesthesia! MG is similar to that (anesthesia reduced acetylcholine), but MG doesn't wear off!

Annie

sounds just like me
mike