Abby, I know it can be frustrating trying to figure out what is a good dose amount for you. I am confused, though, about the dosing frequency and why that would make you worse. What is the dose amount (mg) that you are on?
Mestinon basically gives you two good hours of use. Many docs, when someone starts taking Mestinon, do not want someone taking it more than four hours apart. I take mine every three hours, round the clock.
I think that until you get a handle on the frequency of dose, you shouldn't mess with the amount - just my opinion. My neuro gave me a certain amount I could go over my regular dose when I go out, because MG is a supply/demand thing. The more you do, the more you use up. It's not a "static" disease state, like say a broken bone is!
And at least that would eventually heal.
About a week ago, I talked too much and was too stressed out. Now, with the slightest bit of talking, or even not talking by the afternoon, my neck/tongue/jaw are so weak that they are cramping and on the verge of a spasm. It's often what muscle groups you "dare" to use (sorry, being sarcastic) that get weaker.
But if I take too much Mestinon, I can "overdose" on other muscles. Mestinon can be a real stupid balance.
I hope you can get a 2nd opinion to see for sure what is going on. For me, I had no problems with Mestinon when I started it (nine years ago). It's worked every single time and I'm always weaker off of it.
Susan, I am just so sorry you are having a hard time. I don't know if it's family members not wanting someone to change or being in denial or what that makes them absolute doh-doh brains sometimes. I find it's the people who know me the best and see me the most that "get it."
A steady Mestinon dose is good "in general" but if the body is needing more when you do something, it needs MORE. I think some doctors are afraid of their patients overdosing and then blaming their doctor. They should be more concerned about their patients getting worse and not breathing!!!
My neuro respects me and my intelligence and knows that I won't do something stupid with dosing. He trusts me to take that extra dose when necessary. Some docs give a dose "window" for a patient, like 80 - 100 mg.
Doctors also have to think about things like, Is my patient depressed? Would they overdose on purpose? How much would the insurance cover? Would it cover a flexible dose (which you can get around by a higher dose on the prescription and personal instructions to the patient!). And they are thinking about lawsuits, all the time.
Susan, I wish I could build a house for all MGers who don't have money. Then we could hire a personal doctor and nurse for us! Why is it that getting sick has to drain not only our energy but our pockets? It completely sucks. I think that you should try a second opinion. Have you thought about going to Mayo or a University where there might be someone more knowledgeable? If only for a fresh set of eyes.
I don't think others can really know how tough life is with MG. We do as little as possible because when we do things, MG flares big time. So people see us doing "okay" because we aren't being active. Sometimes I wonder if people are really that dense. How many times do you have to explain something? When we run out of muscle gas, we don't have a muscle gas station to go to, damn it!
I'm just sorry you guys are having a tough time. At least my fingers can still talk right now. Try not talking for a few days - it stinks.
Annie