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!

I just wanted to say that I do experience the same!
Most of te time its more obvious, but for example: I always get droopy eyes ater phone calles (plus my whole face is weak)
or not being able to chew after walking too much.