You have to learn the pattern of your own illness. It takes time and I don't think there are any short cuts.
In the early days of my illness, I didn't know.
It took me a long time to confident enough in what I am experiencing that I didn't need anything (or anyone) to verify it.

I wonder if I don't have 2 things going on.

1. The myesthenia gravis causing the muscle disfunction.

2. My blood pressure medication making me tired.

I must be one of the lucky ones, at least so far. Mestinon 60--3 x day, has virtually ended all my symptoms. I have a small problem chewing sometimes, but not at all like it was. Eyelid problem gone instantly. Only been 3 or 4 mos so far, so hope i'm not speaking too quickly. No thymus problem on ct, but high count on antibodies. Anyway count me happy so far.
Fred

Mestinon is awesome for me. If my soft pallet is weak and my throat feels like it's collapsing, mestinon magically opens my throat and breathing is easy again.
BUT lately I've noticed some odd mouth and tongue movements!
I am not aware that I am doing it!
At first, the inside of my mouth, was sore and raw in my cheek area and my lower lip was swollen. I thought I was having an allergic reaction!
The next day all was well but I noticed I was pursing my lips and sucking my cheeks in. My tongue was pushing hard against my teeth, which I gave done for years even before my MG.
Now my mouth is restless and my lips draw back tightly against my teeth and I have no idea that I'm doing it until my churns are raw and swollen inside my mouth.
I googled it and things like dystonia came up. What a scary neurological issue!
So I suck my tongue and do strange mouth things. I can go for a month without needing mestinon and I'm wondering if it is triggering this involuntary movement because it seems to happen after I take it. I depend on mestinon to help me breathe when needed. But I don't want to develop another horrible issue.
Ok I typed all of this on my iPhone so please excuse any typos... My eyes have triple vision now so I'm signing off. Ugh!

I found this little video on King Koil's Website. Not really sure how they expected it to sell mattresses, but I found it interesting. Basically an neurologist talking about the difference between sleepiness and fatigue in Myasthenia Gravis. There might have been more a little more info on King Koil's Website but my bookmark to to the Youtube video.

http://www.youtube.com/watch?v=jNRaV...ayer_embedded#!

What word to use to describe what you are experiencing is semantics.

The problem is that when you talk with someone who has experienced something similar they can easily understand what you mean, regardless of the words you use. But, when you talk to someone who has not experienced something similar it is important not to use words which may be ambiguous.

I have learned not to use the word "tired" of even "fatigue" to describe my MG symptoms, because those words are being used in everyday language with a very different meaning. Instead, I give an exact description of what I am experiencing (sometimes with pictures if required which are easy to obtain with a cell-phone).

When I show a set of pictures of me with my respirator and then gradually recovering and eventually able to smile a normal smile, after trying to swim a few meters and then slowly get out of the pool, it's enough.

When I say that after I move my arm up and down a few times I can't move it at all and it becomes nearly paralyzed and then I can move it again after 10 minutes of rest, it gives a clear picture.

When people ask me why I am so sad, and I say that I am not and it is just my muscles which can't create a smile and my eyes which are drooping that create this impression, they fully understand.

When I use words like tired or fatigued, they say-yes I know what you mean I too am so tired after a day at the clinic. But, a cup of coffee makes me feel much better. Maybe you should try that?

alice md

I guess took this thread off topic when I brought up fatigue. It was meant to be about Mestinon.

I started it as a conversation on how mestinon affects different people with MG.

My face gives no longer gives any indication of my illness. Unlike it did at the initial onset.

My morning routine is the same everyday. I wake up, take 1000 mg. of Cellcept, 60 mg. of mestinon and then I drink 3 cups of coffee. One hr. later I eat breakfast. EOD I take 30 mg. of Prednisone.

Then comes the test. How many times I can go up and down my stairs before muscle weakness in my legs and the my breathing stops me because it is
physically impossible to do any more.

Sometimes it may be 3 or 4 times and sometimes 1 time is my limit.

So I asked the question about MESTINON because there is nothing consistant with me taking It.

There also is nothing consistant on the days I take Prednisone.

Sorry I got off topic.

scrubbs

Jellyfish, I suspect that when you get these odd mouth things, you are slightly "over cooked" with the mestinon. If I take mine even a few minutes too soon, I get strange electrical feelings and involuntary movement with my tongue.

On the other hand, I some odd lip movements before I got on mestinon. I haven't noticed them lately. So who knows?

If I understand correctly, you have a baseline level of function, which is being able to do everything you need around the house and even going up and down the stairs once.

On your best days, you can go up the steps 4 times with significant efforts (you become short of breath and your legs become so weak that you can hardly even walk). With rest this improves and you do not have any further deterioration.

This sounds like a reasonable level of function with normal fluctuations of this illness. You seem to have unreasonable expectations from mestinon. Mestinon can't even-out your symptoms. It can only decrease their severity.

You can compare this to a patient receiving insulin for diabetes.
If his/her blood sugar is 500 the same dose of insulin will be less effective than if the blood sugar is 300. If he/she just ate a cream-cake the insulin will be less effective that if he/she ate a salad.

My advice would be to move to a house with no stairs (if this is possible) and then you will not have this constant challenge. Or to plan your work in such a way that you will rarely have to go up and down the stairs more than once every day.

It sounds that your illness is not in remission, but controlled reasonably well with (quite a lot of) medications. Possibly those constant tests you are putting yourself in, is making your illness less stable and making it harder for you to taper down those medications. It is also frustrating to constantly face what you can't do. I do not think it is beneficial for MG patients to reach a state in which it is physically impossible for you to do any more. I think you should stop before.

alicemd;

You are right and the constant test are I take is probably futile.

I am considered stabilized but I have very realistic expectations of all my medications. With the medications I am on right now my MG condition will probably never change but my quality of life will diminish because my muscle will keep getting weaker. No hope.

scrubbs