Watch a finger move from arm's length to your nose. Once.
Watch a finger move left, right, up down. Once.
Close your eyes. Keep them closed. Put an ice pack on the crease of one eye. Wait about two minutes. Open your eyes. If they don't look different from each other, you don't have MG.

Oh, also drive an hour and a half each way to get there, spend most of 4 hours there waiting, staring at the walls, and have a bunch of those fancy eye pictures taken and a visual field test. Have a technician do a basic 'can you read the letters' eye test, 'tell me the numbers' colorblindness test, and amsler grid. Do all that early in the four hours, so then you can sit, staring at the beige walls, for a long time before the doctor breezes in and does the extensive three tests stated at the top here.

So there you have it. Blood tests are irrelevant. Symptoms are irrelevant. Look at your thumb, follow a finger, and ice one eye then open both. So easy!!!



I give up.

There's so much sarcasm here, I'm not sure what you are saying.

Some patients with MG do not have ptosis. There are articles in PubMed about that. If N-O's or neurologists haven't read all there is to know about MG, then they won't know that. Not their fault, which is why seeing a MG expert is important.

Most MG patients are easy to diagnose by a neuro-ophthalmologist. When a MG patient is worse, both eyelids will droop and not fluctuate, due to how weak the muscles are (no acetylcholine making it to the muscles to move them).

Did you have double vision while the doctor moved his finger? Did he ask if you did? Did he have you close one eye to see if the double vision went away? If the doctor wasn't thorough, then he might be lazy. Who knows, I wasn't there.

Did you just have this appt? What did the doctor say to you?

While I understand your frustration, expressing that while people are trying to help you isn't exactly helpful. I honestly think that you need to see a psychologist or psychiatrist to help you deal with this frustration. No, I'm not saying that you don't have a real disease! But all of us have varying degrees of coping skills and can benefit from talking to someone about how a disease or doctoring is impacting our lives.

I hope someone will take the time to figure out what is going on with your health! At the very least, show you some kindness.

Annie

What I said, those three things, are all he did. As quick as he could.
Really.
Did not ask me anything. He has no idea if the thumb was double, went double, didn't care. Nor the follow-the-finger.
Would not let me talk to tell him about anything. Would not let me ask anything. Lectured us (my husband was there witnessing this) on how it wasn't really relevant or important to put a label on things (as in conditions/diseases).

Really. He decided I didn't have MG based on watch my thumb come at your nose, watch my finger move, and icing one eye, while both were closed, resting, then seeing if they were different when opened. That's all.
I had to shift and bend over in the chair to prop my arm that was holding the ice pack because it got too weak to hold up to my face for those two minutes, but that was of no consequence to him.

This was the neuro-ophthalmologist chosen by the super-specialist neurologist at Yale New Haven for me to go to. In fact, he insisted I had to, as my regular ophthalmologist "couldn't posssssibly be treating me correctly." (emphasis on the posssss-ibly. Husband was there to witness that, too.) Neuro-op had nothing to add or even comment on regarding my op's treatment. I asked.

Whole day was a total waste of time. And about $100 for gas, parking, and food on the way.

There will be no one spending time on me. There will be no kindness. I get all the lazy and crazy ones.

Good news is, the state Office of the Health Advocate will be appealing my insurance's denial of the MuSK test for me, since neither neurologist's office would do it or even cooperate in providing information for me to do it. It will take 2-3 months or more, but at least it's getting done. Or attempted.

Oh, and yes, he said he didn't care about blood tests. During the lecture on how it wasn't important to put a name (diagnosis) on medical problems.

That's the latest "saying" that the risk managers and lawyers are telling doctors to say. "No need to put a label on it." Why? Because if they can't definitively label a disease, that says that it was "so hard" to diagnose and lets them off the legal hook.

But a label is important. If someone has cancer, they need to know. If someone has ALS they need to know. OMG, the ethics alone of his statement makes me want to write a diatribe to him. Well, at least a monologue or lecture.

My N-O was insanely thorough and respectful. And kind. Is this an east coast thing? I've heard of a lot of doctors not treating patients well at places such as Duke. A kind of "We know everything; period" attitude.

"When doctors always think they're right, then care is always wrong." That's one of my favorite quotes (of mine). Arrogance should be defined as a medical condition.

You need to know what is going on. That is your right as a patient. Your other rights are many, such as asking questions! Maybe you should have asked him if he doesn't believe in Yale's Patients' Bill of Rights.

There are ways to question doctors without being mean to them. Being calm and smart is a far better way to counteract their nonsense.

I'm sorry you had such poor treatment.

Annie