Originally Posted by AnnieB3

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

Thanks, Annie. One day at a time.

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

They ran the same panel on her that was used to diagnose me -- binding, blocking, modulating, and striational. They didn't do the LEMS panel, but during the RNC study, the tech and fellow (doc in training) were talking about how her muscle strength would have shown an increase -- so, LEMS was ruled out there.

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.

Thanks, I did. I am printing this out for the next appointment. Doc is neuromuscular specialist, but we could tell he is stumped.

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.

Sadly, she does. I have learned to deal.............BUT, I wouldn't wish MG on my worst enemy. To think of my precious sister having this..............almost unbearable.

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.

Haha. She will laugh. She already has a rheumatologist, an endocrinologist, a neurologist, an infectious disease specialist, a pain management specialist, a couple of ENTs, and, of course, a GP. Adding another doctor "notch" to the belt?? The infectious guy thought "something" had to be going on when she kept on getting staph (like over 30 times). They ran an IgA test -- normal.

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.

She does journal -- thanks! She says she feels like a hypochondriac when she looks at what she has written. So many things going on -- her body is betraying her. The most peculiar (we think) is her recent diagnosis of paroxysmal supraventricular tachycardia. After reading your bottom link (cardiac muscles are striational?), I cringed.

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?

I saw that. But, it looked like cancer was most likely IF the levels were >1:7680?? (I'm holding fervently to this!!) She has had her thyroid killed -- she has Grave's AND Hashimoto's -- a condition called Hashitoxicosis. With all of the docs, it seems like she has blood work all the time. Will print and mention this smear. Actually, her thyroid has a nodule or enlarged lymph node. Multiple scans AFTER it was killed. It grows and shrinks at odd intervals. We often wonder if it has something to do with her two bouts of mono as a teenager. The CT scan she recently had to rule out a thymoma showed a superior mediastinal mass which is most likely related to the thyroid or an enlarged lymph node, although a thymoma could not be excluded. When we asked the neuro, he said that wording (thymoma) was ALWAYS used. The opinion is that the mass most likely is "that" thyroid nodule.

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)?

Yes, B12 is ok. No digestive issues other than multiple food allergies. Wheat is one of the foods she DOES tolerate.

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.

Yes, I have WARNED her!! I asked about a Mestinon trial. The doc is reluctant -- I think UNTIL after an SFEMG. We all know how LONG the Mestinon stays in our systems and can interfere with the test.

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).

Thanks!! Had not even thought about a pulmo! She has mild-moderate asthma that is treated by her GP. At first, she just thought asthma was kicking up...........asthma meds aren't helping, though.

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!

I know. As distressed as I get reading about so many MGers being blown off by incompetent neuros...............am so glad my sister has a good team.

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/

Originally Posted by limpy

Increased strength after muscle use 'is not' necessarily diagnostic of Lems. That's what they read in a book, but it is not true of me or a lot of other people who have Lems worldwide. And it is not required to have it show up on an EMG either, that's another false premise someone wrote down and a lot of doctors believe it.

Originally Posted by AnnieB3

That's friggin' great. Well, the doctoring part. In someone with MG symptoms who has a high striational AB, the chance of a thymoma is super high.

It sucks that she probably has a thymoma. It is possible that once they remove it, her symptoms "might" lessen or be gone. Might, maybe, possibly . . . I sound the way doctors talk.

You know a good surgeon, if I remember correctly.

I hope she will now pay close attention to what her body is saying to her. She should get a lot of rest before any surgery. She should also consult with pulmonology beforehand, because the anesthesiologist would want to know what her stats are.

I also hope they're careful with any pain meds, like morphine! You know the drill.

It really is a relief to know what's going on. I'll bet she's so grateful to have a sister who has MG. That always sounds awful, but you know what I mean.


Annie