Now that things are cooling off, I had thought about trying to do a little bit of walking. I don't mean a marathon race; just a little bit of walking with my dog and my husband. I am not sure what to do. When I am on my feet too long, my voice goes out. When I talk to long, my voice and my ears and my eyes go all wonky. Is walking going to make me unable to lecture (which I have to do for a living) or is it just going to fatigue my legs? I have already started sitting on a stool for most of my lectures and the students respond to it ok.

Does exercising legs cause fatigue of other body parts? If so, why? I understand a lot about the physiology of MG, but I am still confused as to whether since it is systemic, will fatiguing one muscle group hurt another one. Any ideas?

I am only recently suspected of MG, not even definitively diagnosed yet. The only type of physical activity that does not exhaust me is light water walking/aerobic in a non-heated pool. I miss the walks with my dog too.
kathie

What I want to know, is will walking send me into a total crisis?
I haven't been doing it because I have gotten scared.

I know this doesn't sound like a very helpful answer.

But, too much is what is too much for you.

It is very different for different people and for the same person at different times.

How can you know what is too much for you?

By trying and finding out.

As a rule of thumb, always do a little less than you think you can.

Don't criticize yourself for not doing enough, or for doing too much.

And gradually find the optimal balance.

Using one muscle group may (or may not) lead to fatigue of other muscles.
This depends on the type of MG and possibly its severity.

Patients with purely ocular myasthenia, for instance, will not experience fatigue of other muscles no matter how much they use their eyes.

Some MGers will only experience fatigue during exercise and fully recover with rest, other will have on-going symptoms for the next few days.

As I have said before, you have to gradually (and cautiously) learn the pattern of your own illness. And also learn to recognize any significant changes.

Hi

I find that all very fascinating and wish there were more experiments to read about. Today I went swimming (well no – rather stretching in the pool I would say) right after the exercise I got double vision for a few hours. I´ve also been walking and gotten home with severe weakness in the deltoids! That muscle weakness only travels to other muscle sets that are not being used when I´m in a flare up. Another thing I noticed was that it´s never worked the other way around. My symptoms are predominantly upper body so reading a lot would not give me weakness in the legs where involvement is very mild. Only those muscles that have ever been affected by the ´myasthenic monster´ communicate with each other. The others remain oblivious.

(by the way can you imagine asking that question to a normal?!!!!!)

You are young and very energetic in your life and your personality. I can imagine it is hard to turn your thoughts from ´How can I find ways to exercise? ´ to ´How can I find ways on how to rest this week?!´

At my worst in the space of four years I went from being in ´Kangaroo mode´ (volleyball team, cycling, river rafting the Grand Canyon, gymnast as a child) to being in more like a´hedgehog mode´ I would say. That was hard with a 2 year old. But the body somehow knew how to preserve itself and reverted into this pause modus and it knew exactly what adaptive behaviors to use without me even thinking about them.

4 months ago whilst using a projecting voice whilst moving around (for my job) for just one hour, my whole diaphragm felt like a belt was tightened around it and felt like I was breathing with 2 wooden planks - either the lungs or diaphragm had completely lost their elasticity and went into manual mode the next day for 24 hours. I realized the brain is a wonderful organ. Nowadays it goes into alert mode anytime I even go anywhere even close to a similar situation. And if it´s not the brain, it´s the instincts, or both. Yes my body has let me down but I trust it implicitly when it comes down to the very essence of survival.

If you didn’t sing, ride, lecture or walk I´m 100% positive that you would find some other way to survive and shine just like you already do

Anacrusis

PS A quote and some links from Alice in a previous post:

´when you use a muscle repetitively to the extent that you reach the anearobic threshold of that muscle, there are two consequences-one is that this specific muscle becomes fatigued and the other that it leads to systemic changes. (such as increased lactate levels in the blood etc). In some MG patients, other muscles can be sensitive to those effects. This phenomenon has been described by Marry Walker who noticed that when MG patients used their arm repetitively it caused ptosis and generalized weakness´


http://www.ncbi.nlm.nih.gov/pubmed/123143

http://www.ncbi.nlm.nih.gov/pmc/arti...01551-0056.pdf

http://www.ncbi.nlm.nih.gov/pmc/arti...00455-0011.pdf

I appreciate everybody's advice.

So it is the lactate in the blood that causes other muscles to go psycho? I can see why my eyes go all blurry when I read too much. I can understand my legs being all wonky when I walk around too much. I just feel confused as to why my eyes and ears and voice seem to go out when I am on my feet too much.

I explained it to my family like this: Your cell phone or laptop has a rechargable battery with a limited "life" - when you have used up all of the available energy, you have to recharge that battery before your device can work again.

Let that battery run completely down, and you have to wait a LOOONG time before you can re-use your equipment (not necessarily true nowadays, but that is how it used to be). Sometimes you have to re-load all of your information back into your device if you screw it up too much. And in the worst case, you have to buy a new device because the old one isn't salvageable.

Unfortunately, you can't "buy" a new body, so if you get to that point, you're....well, dead.

With laptops and cell phones, the more you task them with, the sooner they run out of juice. If you know that your battery is running low, you refrain from doing things that you know will completely drain power from your device - you only use it for the things you deem critical/necessary, and you hold off on doing extra stuff until you have a chance to get a full charge again.

Same thing with an MGer's muscles - our "batteries" run low pretty quickly, so we have to know the signs so that we aren't ever in danger of running out of juice. We learn to plan accordingly, and we figure out pretty quickly what tasks are "critical" and which ones can go by the wayside.

For people with MG, "exercise" pulls an awful lot of juice - so much so that we generally end up TIREDER after exercise than people without MG. Which if you think about it, makes an awful lot of sense. "Normal" people are able to pull in all of the AChE that they need - we aren't. Our muscles don't get enough juice, so they "fail" earlier.

Are you taking your walks to try and boost your energy? If so, you are probably finding that you have LESS energy after your walks, and it takes you longer to recover. The physical symptoms that you describe tell me that you are doing too much.

There is nothing "physically" wrong with your muscles, it's the RECEPTORS which draw in the AChE that are the problem. "Building up" your muscles isn't going to do anything to fix the receptors. You can have the strongest, tautest muscles in the world, but if that chemical isn't able to get to them, those muscles are going to be useless.

(By the same token, you can have a full tank of gas in your car and a brand new engine, but if the gas can't get to the engine, the car isn't going to run)

You're going to have to decide what your priorities - in terms of physical activity - are. Which is more important, teaching or going for a walk?

Instead of a stool (you'd be amazed at how much energy it takes to hold your head and neck upright), you may find that you are less fatigued in a chair that has a high back and which reclines. You might also need something to rest your feet on, to take pressure off of your leg muscles as well.

You may want to look into a "zero gravity" chair for teaching your classes - just explain to your students (and parents, faculty, etc) the physical need for it. Most people are very understanding.

The less stress that you can put on your muscles, the longer you are going to be able to do things without wearing yourself out.

Hope this helps!

I have found for me at least worrying about how much is too much actually made me worse. I am learning to just listen to my body each day and do what I can that day. I am trying to learn to be satisfied with that and I am thankful I am feeling better this week than the week before.

I did too much this past week and was dragging this morning but I went to a MG support meeting (45 min drive well worth it) and it was a very positive experience. I have never attended any sort of support group before but it was very nice to meet other people in person who are living with MG. I highly recommend joining a live group.

Steph,

You address a point which has concerned me as a physician regarding the pros and cons of internet support groups.

I think that internet support groups are mostly based on information (and sometimes disinformation).
When you are ill, it is not always beneficial to have all the information (some which may never be relevant for you).
When a physician gives you information about your illness, while seeing you, seeing your facial expression and the way you react, he/she can filter it in a way which will be appropriate for the stage you are in.
When you read it on the internet, there is no one to filter it for you.

I have to admit, that based on my experiences, I have a certain agenda regarding this illness. I want to increase the awareness of physicians to less typical and hard to diagnose variants. And at the same time educate patients not to accept unreasonable explanations.

But, reading your post, I realized that this may not be the right thing for patients who have "by the book" MG (which is the majority of the patients).

So, let me put things in proportion.
Most MG patients will have AchR MG which is very easy to diagnose.
Most neurologists taking care of MG patients have a very good experience with AchR MG and know how to manage this illness.
Most patients with AchR MG will respond very well to treatment and will be able to lead a normal or near-normal life.
Most patients with AchR MG will not require high dose of medications for significant periods.

Probably about 50% of the patients with no detectable AchR antibodies do have AchR MG (and their antibodies can be detected by a more sophisticated test developed in Oxford). Those patients will have the same clinical course and the same response to treatment as any other AchR MG patient.

The remaining 5-10% will either have MuSK MG, or truly seronegative MG (which means that they could have other, not yet recognized, antibodies, or rarely a congenital form of this illness).

This group of patients poses a significant diagnostic and management problem. And quite a few of them fall between the cracks.
As they are only a small percentage of the patients, it is quite easy to dismiss and ignore them or to try and lump them together with the more common MG variants. It is also possible that their number is more than we think, as many of them are not included in the MG statistics, as they are not seen as MG patients.

This does not change the fact that most patients who are diagnosed with MG and given treatment will do well. There is always place for improvement and it would have been good if there was research into finding more effective treatments with less potential side-effects. But, this is true for many other diseases.

Neither the doc nor the neuro could explain that concept to me!