Quote:
Originally Posted by scrubbs
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
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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.