Still undiagnosed and looking at my Labwork. MuSK was messed up so resending to Athena Labs this time, however Achr Blocking antibodies were 23 with 0-25 being normal. Does being on the high end of normal mean anything? I know I've read discussions of the antibodies fluctuating and that makes me wonder what the neuro would think if they had been 26 on that day? I just wonder why we would ever have a detectable amount of those antibodies without a disease process? Thanks.

What your high-end normal level of Acetylcholine Receptor-blocking antibody might indicate is that you are in the early stages of MG.

The information here could help you in discussions with your health care team; http://emedicine.medscape.com/article/2094601-overview.

There's really no easy answer to your question.

Some people are found to have autoantibodies in their bloodstream and never end up getting a disease.

Some people have a lower level of autoantibodies, making a diagnosis more difficult.

Lawyers make a diagnosis even more difficult, because the positive range of AChR labs has been raised over the years, especially blocking and modulating, so that it's more obvious when a patient has MG, thereby letting the doctors off the hook (and harder to sue) if they can't figure out if someone has MG or not when their antibody labs are "iffy" or if they treat someone for MG when they didn't really have it.

No, there shouldn't be ANY AChR autoantibodies circulating in one's blood.

That's why a MG diagnosis is a clinical one, backed up with tests. And those antibodies fluctuate, sometimes not becoming positive until later in the disease process.

Also, MG can be like lupus and have "flares" of the disease in some people, fluctuating in severity over time.

I thought I had answered this question before, but I'm sure you want every detail you can in order to understand this process. We all know what it's like to not know what's wrong with us. It's very frustrating.

Patience is your best friend right now, unless of course you get worse, then urgent care in the ER is your best friend.

Again, ask them to redo the test and send it to Mayo.

Annie

I'm sorry if I repeated myself. I am trying to research and read on many sites and didn't remember asking that question before here. Thank you for responding anyhow!

How can I tell where my first labwork went? I had it drawn thru Labcorp and I'm not sure where they send it on to? Right now I have a collection kit in my kitchen and I'm supposed to call Athena tomorrow to come draw my Anti-Msk lab. Something I saw online said that Athena is the only lab that does Anti-Msk?

I supposed you're right, Annie. I just need to sit back and wait until I get worse...or not! I'm not very patient I guess!

They have to say on the lab results form where the blood was sent. Labcorp usually does their own AChR testing.

Yes, MuSK is only done through Athena (so far). Although, they do run it in the UK, too, at Oxford.

If you want to do research, do it at WUSTL or some other reputable site, such as PubMed or Medscape.

They don't have patient stories or anecdotal info, though, like talking about how liquids we drink can shoot out of the nose when bulbar muscles are weak or holding your chin down in order to swallow food well.

Neuros are an odd bunch. They don't like patients asking them too many questions or acting as though we know more than they do. But they are also often slow to diagnose, and that is beyond frustrating. So we just fold our hands on our laps and wait for them to make up their minds?

My first antibody test showed almost above normal. The next one, a year later, was above normal. So, yes, numbers can be on their way up.

I hope you can watch a good movie or whatever else you like to do. Doctoring too much, or thinking about doctoring, does not make for a great life. Believe me, I've done more doctoring than most and I will not waste another second on that process if I don't have to!

You'll get answers. And then comes the daunting task of deciding upon a treatment.

Annie