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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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03-15-2014, 04:04 PM | #1 | |||
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So my question for you, dear Annie -- and for anyone else who might have a clue. Do you know of any cause (other than MG) for extremely elevated striational antibodies? My sister is 45 -- does not take penicillamine for RA and has not had a bone marrow transplant (the only other reasons I have found in my exhaustive search). Thanks much!! Sorry I've been MIA. LOTS of stuff going on in my life. Miss you all a lot! (((HUGS))) jana
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03-15-2014, 08:19 PM | #2 | ||
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Grand Magnate
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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/ |
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03-15-2014, 09:58 PM | #3 | |||
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Thanks so much, Annie!! jana
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"Thanks for this!" says: | Needananswer (03-19-2014), rach73 (03-16-2014) |
03-16-2014, 06:25 PM | #4 | |||
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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.
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03-17-2014, 10:08 AM | #5 | |||
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My sister sees her neuro and endocrinologist this week. Looks like she will be getting MORE blood work. Thanks for the info, Limpy!!
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03-17-2014, 07:16 PM | #6 | ||
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Grand Magnate
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B12 is "okay?" Anything at 500 and below is suspect.
Limpy is spot on about that. LEMS on a repetitive nerve stimulation doesn't always show that slight strengthening, followed by weakening. For some people, they have to exercise before the test, so that they can see the decrement better. If, scratch that, WHEN she goes to a pulmonologist, make sure that they do MIP and MEP. That will differentiate between asthma and a neuromuscular cause. Did she see a neuro-ophthalmologist? I totally get how annoying it is to see a lot of specialists. It's like a health care scavenger hunt! And the only "prize" you get after all of that is a disease (or two or three). HOWEVER, MG can be deadly. Or at least put you in the hospital, where you can get a bunch of germs and die from that. If you guys have AIs that run in families—and they do, contrary to what some docs say—then it's quite likely it's MG. Did they send the ABs to Mayo? They invented the damn tests and have a better track record at accurate results. Does her endo run morning, fasting labs? They are the most useful. Does she run electrolytes, too? I hope she gets answer soon. Tell her to hang in there, and make sure to take time for a LOT of sleep and naps. It's the only way to manage MG without drugs, if she has it. Annie |
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"Thanks for this!" says: | jana (03-19-2014) |
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