Is it possible to have MG with low antibody titers? Mine are AChR modulating 7 and blocking 9.

I know those are well below the positive threshold, but I have symptoms such as attacks of weakness and an inability to hold up my head.

Hi, Elonwen. Do you know what lab ran your tests? Sometimes that can actually make a difference in the results.

Mayo created the test and they tend to have more accurate results.

Antibodies fluctuate. Even from day to day. An antibody level does not necessarily reflect the severity of a disease.

Did they do the MuSK antibody test, too?

Did you have a thorough clinical neurological exam? If so, what did the neurologist say about that? If you had one, get the notes from that appointment. Sometimes they write things in their notes that they don't tell patients.

Early on in MG, antibodies might not be as present as they are later on.

Did they do any other tests, such as a RNS, EMG, or a Single Fiber EMG?

If your symptoms become severe, in that you can't breathe well, move well, or swallow, that's when you need to dial 911. If you have MG, it can become so bad (especially if you aren't being treated yet), that it can be life-threatening.

Don't let that scare you! It's only meant to be informative. Not everyone has a MG crisis. Until you get a diagnosis for what's going on, please take it easy. Rest when you need to. Don't push yourself. Keep from getting too hot or too cold, which can make MG worse. Get enough sleep, etc.

What else can we do to help you?

Listen to your body and trust your instincts. Get more help if you need it from your doctors!

Annie

Mayo ran the tests. They did acetylcholine binding, blocking, and modulating, and striated muscle antibody. I only have blocking and modulating ab.

I saw the neuro who ordered these tests only once. He only remarked that I have significant weakness of the neck muscles, and then tried to send me to a psychiatrist.

I did have a nerve conduction test. The tech said that I have "weak extensor muscles". After the test, the neuro said that the results came back normal. So, I have 2 different interpretations of the nerve conduction test. Something is definitely screwy, and they will not give me a physical copy of the test results, even though I have asked many times.

I really hate doctors

psychiatrist or Physiatrist??

[Physiatrists, or rehabilitation physicians, are nerve, muscle, and bone experts who treat injuries or illnesses that affect how you move

Rehabilitation physicians are medical doctors who have completed training in the medical specialty of physical medicine and rehabilitation (PM&R).]
http://www.aapmr.org/patients/aboutp...ysiatrist.aspx

Psychiatrist. He wanted me to see a shrink so that I can, in his words, "accept my pain and learn to live with it."

Yea, I'm supposed to live with severe attacks of weakness and a neck that's atrophied and horribly painful, even though there are medications that can greatly improve my quality of life. Meh.

Do you mind saying which doctor you saw, either here or in a PM?

You have the legal right to have your test results. Send in a written request to the medical records department (they should have their form online). They have to give them to you.

Was the neuro a MG expert?

A second opinion is not unheard of in the process of being diagnosed, unfortunately. You could tell us where you live and someone might be able to let you know of a good doctor to see.

I'm really sorry you were treated like a head case. Clinical weakness usually has a cause. It's not normal to have fatigable weakness and it is the hallmark of MG.

Annie