[southblues]

I am seronegative (or at least I was when I was tested). My MG symptoms seem to be somewhat stabilized for now. As long as I don't try to over do, I am getting along in my modified, slow life. If I over do or miss my mestinon, I am really, really disabled.

I have read and read about how this disease process works, but I still have questions.

Why am I seronegative, but still symptomatic?

Did the antibodies move in, destroy my acetylcholine receptors permanently, and then go away?

Is there the reasonable expectation that I will remain stable? Or will I go downhill or even get better?

If the antibody is really gone, would I even benefit from immunosuppressive therapy?

What about everybody else? Do you feel you have any of the answers to these questions from your own experiences?

[AnnieB3]

Celeste, You are too funny!

Antibodies don't correlate necessarily to disease severity. It befuddles researchers to no end.

Some antibodies are tissue bound and some circulate in the blood. It's "possible" that your antibodies are busy in your NMJ and were not circulating at the time of the test. My AChR was negative the first time and positive the next time. It can change like that.

The immune process that caused the antibodies won't go away, unless you take immunosuppressants or go into remission. I honestly believe that you can "calm down" your immune system by taking good care of yourself, getting high nutrients/lower calories, enough sleep, meditation, low or no stress, etc.

The decision to use drugs to suppress the immune system is very personal. I can't do it. So I have to rely on taking good care of myself and not overdoing things. You might want to have a discussion with your neurologist about IVIG and if that would be a good thing to try. Some will do it for seronegs and some won't.

You might have an antibody other than AChR or MuSK. They haven't found all of them yet. They're working on it though. So I doubt that your antibodies have disappeared. Google Dr. Angela Vincent at Oxford University, UK. She and her team are very busy trying to figure all of this out.

You pretty much have to go by how weak your body is or isn't. There's no test or simple clinical exam that can tell you what's going on in your body. That's mainly why MG is a clinical diagnosis that is backed up with tests.

I hope that helped a bit.

Annie

[southblues]

Thanks Annie. It does help. It is just so frustrating to me. I guess that understanding it won't make it go away, but it may make it feel better.

Interesting note: my son went to Oxford for a year. His university has a great study abroad program. He had full scholarship. All I had to pay for was plane tickets and food. He had a wonderful time and actually even studied a bit.

[StephC]

Annie

Thanks for the name angela vincent. Very interesting i probably would Never have found on my own!