Matilda, Hi and welcome.

Actually, muscles in mitochondrial diseases do not fluctuate like they do in MG! Mitochondrial diseases tend to be static or progressively disabling.

I agree with these guys that what you're describing sounds like MG. There are very objective markers they can look at - like fatigable ptosis - that can show if you have MG or not.

Orthostatic hypotension could be from dehydration too! No diagnosis should be made on a collection of symptoms that don't all fit one diagnosis. You could have more than one thing going on.

Don't sweat the psychologist crap. They tend to do that to many people, especially women, when they can't easily figure something out. You obviously have a very real disease state.

Your response to Mestinon sounds like a typical response. Mestinon does not get rid of ALL muscle weakness! It helps our muscles to be stronger but does not address the immune response that is attacking our muscle receptors.

An MG expert I saw said that he can have MG patients who need a wheelchair and can hardly stand and have a normal SFEMG. Then he can have patients with a seemingly mild case of MG with a highly abnormal SFEMG with blocking. Or anywhere in between!

Your SFEMG results need to be combined with the clinical exam and other tests to diagnose MG. A SFEMG is not specific for MG but is sensitive for it. Having blocking on a SFEMG is pretty indicative of MG, however.

Do you have copies of your antibody tests? If not, get them! And do ask for the MuSK antibody test, like Alice asked about, if you can.

If you have trouble breathing, you can have a pulmonologist assess that to see if you have fatigable chest wall muscle weakness. MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure) are the breathing tests more specific to MG and other neuromuscular diseases.

You can see a neuro-ophthalmologist to assess your ptosis and check for double vision.

Sometimes it takes seeing more than one doctor or specialist to figure out what is going on. I really hope someone takes you seriously soon because undiagnosed and untreated MG can be dangerous. If you ever get suddenly weak, can't swallow, move or breathe well, get an ambulance and get to the hospital right away!

Hang in there. Keep trusting your instincts and trying to get help!

Annie