Quote:
Originally Posted by karenbbb
I started to wake up and get double vision, which I also sometimes had at night. I filmed my eyes and saw that my left eye lags when I look at something close and then at something far away, and it also turns in as well as out. Outside of those episodes, though, I have periods of ridiculous fatigue where my eyelids droop, my speech slurs, and my voice gets hoarse. I also have weakness in my neck to the point where I have to lie down to rest it. My fatigue almost always happens towards the end of the day.
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Karen,
Again, you have found a great place for support. We have all been where your are now. You're not alone.
You are describing classic MG symptoms. They were my first symptoms, as they were for many others here. MG is often called the "snowflake" disorder, because it is different for each of us. While we all share some symptoms in common, none of us share all the same symptoms.
The important thing to know is that MG can be managed, and you can enjoy a long and rewarding rewarding life.
It sounds like your are waiting for the results of your MG antibody blood test, or the interpretation of the results. I do not know how to intemperate the numbers you posted. It is my understanding, though, that any amount of antibody is a positive test. Some of the other forum members will know more about the numbers than I.
If you get a positive MG antibody blood test, you can start pushing your doctors for treatment. Or, if that does not work, your new doctors.
You may find our experience with doctors helpful going forward.
If you have a negative blood test, you may still have MG. There are other diagnostic tools the doctors will use to make a MG diagnosis.
The usual course of treatment starts with Mestinon, a drug that treats the symptoms of MG. Sometimes this is enough to tamp back the symptoms. If Mestinon alone does not reduce symptoms to a acceptable level, other therapies are employed.
So sorry you have to deal with this thing,
-Mark-