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 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.

That is extremely useful information sent in both a positive, informative and also inspiring manner!
When you join an MG internet group it can be from any region of the broad myasthenic spectrum. You may not always know exactly which area you are coming from, exactly where you are landing or sometimes what direction to take afterwards – But a forum like this can still at times be the most important place to´go´for some people -
So thank you for sending all those great coordinates that assist with all our good intentions whilst being on an MG forum.

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