Hi, Flutebell. Welcome to the NT forums!

I'm sorry you haven't been diagnosed yet. It's almost worse than having a disease!

Are you on any other medications or have any other conditions? Any other symptoms?

I'm asking because you mention being anemic. Is there a cause for that (i.e., a period)? Do you take iron (plus vitamin C to absorb it)?

There isn't much blood loss from a muscle biopsy. Unless you are on blood thinners or have a bleeding disorder, it should be fine. And they can always premedicate with antibiotics and give you a full dose of one IF you get an infection afterward. I didn't get one. If you take care of the area afterward, it should be fine.

I have to tell you that a trip to Europe when you are doing so poorly is, well, asking for it! You combine how poorly you are doing, with the constant moving around, plus the jet lag (which tanks the adrenal glands and that alone can bring on a MG crisis), then I hope you know where every hospital is where you will be! You can't push MG. It'll push right back.

Why are you pushing yourself right now? Stay out of the heat. Quit doing physical activities. Your body is SCREAMING at you to not do that! If you have MG, a MG crisis can come on rapidly. There's no way to predict how severe it will become, either. And it takes longer to recover from a crisis than it does a slight increase in weakness.

Why do that to yourself?

Have you had your IgG levels tested? If they are low, you can have a false negative AChR antibody test.

Myasthenia Gravis: Diagnostic Tests

Antibodies both circulate and are bound to tissues (which is where they attack!). Maybe your antibodies are too busy attacking tissues right now!

A virus does not cause a bad leg cramp!!! Oy. Walking too much and having weaker legs does.

Quit being in denial. It could end you up in an ER. MG is all about doing something, becoming worse, and being relatively better with rest. It's not like a rubber band that you can keep stretching. MG snaps and often when you least expect it to.

It can also trick you. You can become weaker so slowly that you might not know the difference between okay and bad. I'm serious. I couldn't squeeze the doctor's hands in urgent care right before my MG tanked. I was barely able to move or breathe once I made it to the hospital.

Until you know what is going on, you have to be careful.

Why are your calcium and potassium low? You need to see an endocrinologist to have that evaluated. They can be signs of another disease. Calcium can be low for many reasons, such as not enough stomach acid or celiac disease. Do you have an GI tract symptoms?

Did you know that Mestinon can make asthma worse? It actually caused my asthma. By "puffer," do you mean Flovent or another steroid? If you are on a steroid, inhaled or swallowed, that can make ANY MG tests look normal when they're not.

Are your doctors even aware of that?!

Only a neuro-ophthalmologist can say for sure whether you have ptosis when it's not obvious. They have specific tests they can do to show that and double vision. You can always take photos of your face in the morning, later in the day, and at night to compare. The lighting should be consistent, as should your head angle.

Have you held your pointer finger in front of your face to test for DV? Move the finger from center to the right field of vision (not moving your head, only your eyes). Do the same on the left side. Do you see one or two fingers? If you see two, does it go away when you close one eye? If so, that's binocular vision that people have with MG due to the eye muscles focusing the eyes differently.

A diagnosis of MG is not always that straightforward. Many factors come into play. And antibody tests fluctuate over time, as Limpy said.

What else can we help with?

I think you need a couple more doctors, plus that muscle biopsy. And please tell your doctors that a steroid inhaler does indeed go systemic and can make the tests look normal when they might not be!

I hope you get answers soon!

Annie