This may not help but I can't tell when I'm weak until I try to do something. I have to test it out. I may stand up and be shocked at how strong my legs are, or at how weak they are...I can't feel it coming though. It could change also after a few steps, minutes, or a couple hours. I never know really what's coming. Until I actually go to use the muscles, though, I don't know how they are going to behave.

we all do that. we carve our order by leaving the disorderly parts out. our mind is limited in its ability to comprehend.
Yet, we have to be aware of doing that and gradually put back those missing pieces or else we may end up having a partial and even distorted picture.

Think about it: in a 10 minute period one cell in our body is more busy than a very large factory. Numerous changes occur each femtosecond. And this is only one cell. Think of the complex orchestration required to co-ordinate the function of numerous cells in one organ and then the cross-talk between those organs and finally the rapid response to changes in the outside environment.

Our understanding of those complex biological systems is truly amazing and our ability to change and control some of them is even more so. But, should it come as a surprise that there is so much we still don't understand and don't know?

Modern medicine and modern society have given us the illusion that we can understand and control those processes. We can do better than nature. But the reality is that we are part of nature and we can't do better. We can utilize nature for our needs (and this too has to be done cautiously), but we can't improve it.

This is somewhat philosophical, but what my illness has taught me is that we have limited reserves. If we use them wisely, they can last longer and enable us to do what we want. This is true not only for us and our body, but for the entire human population.

A superficial understanding and trying to use our reserves in the (supposedly) most efficient way, can eventually lead to the exact opposite.

I don't think we should stop searching or stop trying to gain a better understanding. But, I think we should be humble and realize that we only have the tip of a very large ice-berg, even if we think we have found all the answers.

Many times I ask my neurologist questions. Many times he doesn't have an answer. But, this in itself is an answer. I feel much better knowing that he too doesn't know. If he has seen numerous MG patients and doesn't know the answer, how am I expected to know? If he can't find treatment which will control my illness and change its course, how can I be expected to do so?

He keeps on telling me that MG (and even more so MuSK) is the most unusual, hard to understand, crazy disease. I keep on telling him that this is because they know so little about it and every illness would appear so if it was so poorly understood. But practically,we are both saying the same thing.

I have a research collaborator who suffers from an illness in my realm of practice. A while ago I shared my frustrations with him. I told him that in his illness there are thousands of clinical trials and a lot of research, whereas in my illness there is none.

He said-that may be true, but do you fully understand my illness and do you have a cure for it? I had to admit that with all our understanding and novel treatments we really don't yet. The more we learn and understand the more we realize how little we truly know.

It is hard to accept the fact that we have an illness in which many people fully recover and can lead a completely normal life and yet we don't. It makes us feel that maybe we are missing some important clue which could be the ultimate answer. It makes us inevitably think that maybe we or our physicians are not trying hard enough.

But, first, we don't have the same illness, even if it has a similar name. Second, there is no disease in which everyone responds to treatment and everyone is cured, because even if we don't yet know how to recognize them there are subtle differences among patients with the seemingly same disease.

We are fortunate that our illness doesn't lead to immediate death and that despite its disabling symptoms, we can find ways to work around them.
we can occasionally find a certain trigger we can avoid, we can find better symptomatic treatment and supportive care and all those can significantly improve our life.

But, with that we have to accept the reality and realize that its not because we are missing something relatively simple (because with our relentless searching we would have found it by now) or because we (or others) are not doing enough.

Tracy, what you say is very interesting. Because sometime ago, I discussed the fact that MG patients do not only have motor problems, but also sensory problems. We lose our ability to automatically know what is heavy or light or how strong our muscles are and we have to find ways to compensate for that (just like a person with sensory deficits).

There is a possible complicated physiological explanation for why that happens.
A rather simplistic explanation is that our brain gets confusing information from our muscles because on the one hand it has to fire more to get it moving (which makes us think that something is heavy) and on the other hand the tone of the muscle spindle is decreased (which makes us think that something is light).

I know that in the early days of my illness I would have no idea if the cup I tried to pick up was heavy or light. It was a true "alice in wonderland" experience. I felt as if I lost the ability to navigate. I had to teach myself how to know. I eventually learned to do it so well that I could tell what my peak flow is going to be quite accurately before measuring it. (even I was so surprised by this ability).

But, if I don't concentrate on what I am doing or am distracted by something, I totally lose my ability to know how strong I am and exactly like you describe I can be surprised at how strong or weak I am. I can choke on my food if I forget to concentrate on my eating. Probably just like a blind man would if he forgot to use his cane or other senses that compensate for his disability.

Tracy, I'm familiar with what you describe. Sometimes I stand up from my computer chair, forgetting to be careful, and rush towards the door, and after two steps I hit the floor. But other times I feel the weakness coming over me. I'm not sure if I only feel it when it's more intense, or when I'm paying closer attention, or if there's something else going on. But I've definitely said, many times, to my husband, "Wait, let me stand up and see if I can walk."

Abby

I also don't have a clue whether I will be strong or weak until it happens. I have learned to be cautious and test out my legs before walking so that I don't hit the floor. I don't get any sensory clue that my muscles are about to quit.

Abby, We are mammals. Mammals are supposed to nap.

Perhaps your cortisol levels are tanking earlier every day. They are at their highest in the morning - which is why they should be tested at that time - and decrease throughout the day. Maybe it's time to see your endo to have a thorough look at everything.

In science, there are a lot of axioms they refer to, such as Occam's Razor or parsimony. Basically, "Keep it simple, stupid." Often the most simple explanation is the right or best one. Of course, they probably weren't referring to MG.

Annie

Alice, exactly...I have lost the ability to navigate! I have no idea how heavy things are as well. I often ask a normal family member to lift something to ask them if it's heavy to see if I'm just weak or if it is really heavy! Or to open a door, etc to see if it's me or the door!

I thought all the posts on this thread were rather interesting.

I personally remembered that a cup of coffee felt like it was a heavy object when holding it in my hands a couple of years ago. But the posts made me think about how it was in more detail.

The first few seconds of holding a cup it felt like its normal weight (of pre myasthenia times)
But by 6 seconds, holding that same cup of coffee now felt like holding the weight of a bucket of concrete -
away from the body.

That was quite a stable pattern for many months with diurnal fluctuations, which to me at that time just meant my coffee would turn into concrete much faster by the end of the day!!!

These days I don´t notice the weight of the coffee anymore but I do notice the weight of my own arms changing from day to day when engaged in an activity above my head. So some days they feel 10 times as heavy as other days - but that I can actually do tasks with arms at a 90+ degree angle away from the body makes me an extremely grateful person

I know I´m not the only one to experience this, but it got me thinking about describing the sensation of weight and also about speed, it takes a longer time to reach those old myasthenic thresholds these days and my symptoms are milder yet fluctuating faster than they did previously (at least where the deltoids are concerned.....)


Anacrusis

Alice;

“So, the effect of exercise may only be seen after a few hours of even days”

The most typical posting here about fatigue seems to be that one of us did something that pushed there limits and ending up paying for it later in the same day.

Last week I told my neuro that I pushed myself to the limits with 20 to minutes of exercise on my Total Gym. No standing with a Total Gym even though leg exercises are part of the workout. I told him that the rest of the day was not was not bad at all but the following day I suffered with very severe muscle fatigue.

He thought it was unusual that I did suffer that day.

Your conclusion that the effect of exercise may only be seen after a few hours or even days aligns at times with the effect of exercise or exertion has on me.

I am curious if anybody else here has noticed this because I can't remember, even though there may have been postings.

scrubbs

My impression is that it's very common, from what I've read here, for people to feel the fatigue the next day, or even the second or third day, after exertion! It's certainly true for me.

Neuros don't know everything. Mine told me today that myasthenic fatigue is "muscle specific," and that if I tire one muscle, it won't affect another muscle. The evidence that he's wrong is not just anecdotal. I learned on this board (from Alice) about the Mary Walker phenomenon. And it's true. On Saturday I spent way too much time on my feet. On Sunday, my eye muscles were fatigued.

Abby