It sounds like your doctors have been very thorough. Has anyone though about circulatory issues like Antiphospholipid Antibody or endocrine issues like diabetes? I believe I mentioned those before.

Has your internist looked at this from a different angle? What if it's not something you can "see" on imaging but something like a vitamin deficiency?

Can you think of anything other than the onset of muscle weakness that could have happened before it all started?

Sometimes while doctoring, you might never find an answer. However, assuming it's MG without doing - like you said - a Tensilon test (which can cause greater side effects) or using Mestinon can be dangerous too.

I'm almost getting the sense that you're afraid of going blind. Do you have a "hidden" fear like that making anxiety worse? If so, it helps to talk about that with someone. And, yeah, sometimes it does help to talk to a psychiatrist. No, I am NOT saying your symptoms are in your head! Though your doctors seem to have ruled out your structural head as the issue.

There are so many things a good therapist can do for you. There are "tricks" to help get you out of the panic phase and into a calm phase. Meditation is one. The feelings of anger and panic can't exist at the same time, so feeling more empowered is good.

I do think you should feel reassured that you've had such a thorough work-up.

I do have to disagree about the focus issue. With MG, you have binocular double or blurry vision and when you close one eye, that goes away. It's a physics issue. If you have one source of focus, weak muscles don't matter. Your eyelid can close more and the field of vision could be less. But unless you have other eye issues like astigmatism, you should have clear vision when you close that one eye. Do you need reading glasses?

Some people are more sensitive to light. What color are your eyes?

I hope you can have a good conversation with people on Monday so that you are more reassured. In the meantime, only you know what is truly causing so much anxiety. Is it the sight issue itself or an underlying fear?

Whatever is going on or not going on, I'm sure your doctors will help you! They've ruled out some pretty big causes.

One other little odd bit of info is that recent research has shown that a reduced amount of acetylcholine can be a contributing factor for migraines, as can channelopathies. So maybe having some consistent dosing of Mestinon would help. It would definitely help your MG!!

Hang in there!


Annie