Hi, Jed. Welcome.

Do you have the test results from the hospital? If not, please obtain them. You need to know exactly what those tests were and what they say.

Ophthalmologists don't normally run nerve and muscle tests. Can you say what the doctor did?

Normally what is done to test for MG is to run the AChR antibody test (MuSK antibody if that comes back negative), do an RNS, EMG, or SFEMG (more specific to MG), and a thorough clinical exam. There are other tests that can be done, such as a chest CT after there is a diagnosis of MG. Some patients have thymic hyperplasia or a thymoma. Pulmonary function tests are often done as well, both for a baseline reading and to check if breathing is fatigable. MG is all about muscle weakness that is worse upon exertion or repetitive/sustained activity.

Sometimes there is a brain source of one-sided weakness. But MG can also have a dominantly weak side. Mine is my right side. Both sides are weak, but the right more than the left sometimes. I was misdiagnosed with lazy eye when I was ten due to the lopsided droopy eyelid.

The symptoms you describe sound like fatigable weakness, such as becoming worse in the afternoon. That's pretty typical.

What is also pretty typical is the arrogance of some neurologists. You deserve to have a thorough evaluation, not to be pooh-poohed for your very real and serious symptoms. If you say what area you live in, we might be able to refer you to a MG expert. That is the type of neurologist you should see.

Do you have a history of anxiety? I'm only asking because having an undiagnosed condition can cause anxiety, as can the fear of cancer returning.

The breathing pattern in MG when it is worse can mistakenly be labeled hyperventilation, when, in fact, it is due to poor breathing. Has anyone checked your O2 when you feel that way?

There's no such thing as "just ptosis," especially since you have had symptoms of weakness in other parts of your body. If you pull up on the droopy eye, does the other eyelid then droop? Try that some time. That is called "enhanced ptosis" and is another sign of MG/fatigable ptosis. What also makes MG ptosis worse is an upward gaze test. Holding your head still, look upward with the eyes only. Maybe take a photo before and after to see if there is a difference. Eyelid muscles fatigue after this test in MG.

The type of eye doctor to see for ptosis is a neuro-ophthalmologist. They have specific tests to see if eye muscles fatigue or if there is double vision (caused by the two eyes not focusing in concert).

A road trip for someone with undiagnosed and untreated MG can "tank" that condition. Driving uses a lot of different muscle groups. That tends to cause more overall weakness in the body. In other words, the demand for acetylcholine/ACh (muscle gas) goes up when more muscles are used. MGers don't have enough muscle gas getting to the muscles due to the attack on the muscle receptors. There aren't as many muscle receptors for the ACh from the nerves to go through. Make sense?

There are also drugs that can make MG worse (some of the eye drops at the ophthalmologist, for example). Heat can make MG much worse, so stay out of the heat! Both extremes of cold and heat can do that, but heat seems to exacerbate MG much more in most people.

I suggest finding a much better, kinder neurologist who will take your concerns seriously. If we can help with that, please let us know!

I'm sorry you had cancer. Which kind? That might be a clue in the overall picture.

Just take it easy until you are thoroughly evaluated! If you become really weak again, either go to the ER or dial 911. Let them know that you might have MG.

Annie

Home
Muscular Dystrophy Association