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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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05-09-2012, 10:10 AM | #11 | ||
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Hi, and welcome. I'm so glad you're seeing a neuro who is testing you for MG. Please know that negative bloodwork doesn't rule out MG. Many of us here have never tested positive for antibodies. Also, if you test negative for the AChR antibodies (the most common), they should test you for LEMS and MuSK. Even if you test negative for all three, you might still have MG. There are other antibodies that cause it, and some people test negative at first and positive later.
Has anyone suggested POTS (Postural Orthostatic Tachycardia Syndrome) to you? I learned about that here, because some of the symptoms mimic MG. It would be worth googling. It causes a lot of the symptoms you mention. I find it very hard to stand in line, too, and I think you're right: it's because it puts continual strain on the same muscles. I have a rollator (rolling walker with a seat) that I bring to department stores or anywhere that I'll have to stand on line. That way I can sit. It's typical of MG to get worse when you have an infection. My guess is that an infection kicks your immune system into high gear, and then it produces more of the antibodies that are attacking the neuromuscular junctions, but I'm not sure if that's the real reason. Many of us here have thyroid problems. Did you take PTU or methimazole (thyroid suppressants) before your thyroidectomy? There's a study that suggests that these drugs can cause MG. I think that's how I got it. If you're interested, I'll try to find the link. Since your thyroid gland has been removed, I'm sure you're taking synthroid or some thyroid hormone replacement. Do you have your numbers checked regularly to make sure you're not taking too much? Please feel free to ask questions here. Abby Quote:
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