Hey, Jana!!! It's so great to see you! I hope you've been doing well. You are missed, too.

I guess I should've mentioned Ryanodine and Titin, eh? Did they check your sister's modulating ABs? Did they do the LEMS panel?

Well, I'm sorry she's having symptoms. Why do AIs have to run in families?!

Striational ABs could be related to the RA. The problem is that they aren't "specific" for any particular disease. Although, when they're that high, it means that something in the immune system isn't happy. Make sure you look at the Mayo algorithm pdf and the other articles.

The doctors were absolutely prompt, which is great to see, and right in what they did, so that's good. And I'm sure she knows a lot about MG because of you having it.

I highly recommend that you guys find a very good immunologist. There are tests that they run that other specialty docs don't. And there might be some familial thing going on that could help everyone. You never know what they might be able to "see" that other doctors can't.

If she has any other symptoms, even if they don't seem related to a possible MG or other disease, she should write them down in a journal. Track them like dogs! Right now, it's those little—or big—clues that will help her figure this out.

I hate to say this but the paraneoplastic AB can be a sign of cancer elsewhere, other than the thymus. Does she get regular mammograms or paps? Has her thyroid been scanned? Has her primary doctor looked at her cells via a peripheral blood smear, to see if any of them look odd?

And I have to ask . . . have they checked her B12 level? Pernicious anemia is one of the diseases associated with a high striational AB. Does she have any digestive issues (i.e., celiac)?

I'm sure you've told her what to do if she can't swallow, breathe, or move! Are they going to try Mestinon? It might not be MG, but since her ACh ABs were negative, she has to go by symptoms.

Since she has SOB, she should go see a pulmonologist! They'll help narrow this down, too. But don't assume it's MG, just in case it's polymyositis or some other stupid disease (my aunt died from complications of that one).

At least she has doctors whose jaws drop when they see a significant test! Please tell her to hang in there and trust her instincts!

Annie


http://neuromuscular.wustl.edu/mtime/mgthy.html

http://www.ncbi.nlm.nih.gov/pubmed/23463255

http://www.ncbi.nlm.nih.gov/pubmed/15767509

http://www.mayomedicallaboratories.c.../Overview/8746
(Click the paraneoplastic pdf in the file.)

http://www.hindawi.com/journals/ad/2011/740583/