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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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01-23-2014, 08:07 AM | #1 | |||
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My primary care doctor suspected I had a neurological problem, so he order a blood test in late October 2013. Here are the results:
Acetylcholine Binding AB 34.0 nmol/L Acetylcholine Binding AB 13 percent Acetylcholine Modulating AB 77 percent I know that these numbers, along with my symptoms, show that I have MG. But what else do they reveal about my situation? -Mark- |
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01-23-2014, 10:16 PM | #2 | |||
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From what I can tell, the numbers don't really mean that you have it bad or have a mild case. They just mean that you have it.
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Celeste |
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01-23-2014, 10:51 PM | #3 | ||
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Mark, I think Southblues is right. If you have antibodies, you have MG but the number of antibodies doesn't predict how it will unfold. Sorry you have it, but it's not the end of the world or the end of having a good life. MG is an uncommon disease and even the docs don't always know a lot about it. You need to learn as much as you can and this is a good place to do that. Ask a lot of questions and search this forum.
MG is a tricky disease and you need to learn how it affects you because everyone is different. Most people find a way to do well despite MG but for some it's harder. Everyone makes it work. The more you learn about what works for you, the better. It may take some time to figure it all out. It's pretty much impossible to not worry about finding out about having a chronic condition. The worry won't help you. You will figure it out and it will be OK. Sorry you have to deal with MG. Good luck, we all need some of that. |
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01-24-2014, 07:55 AM | #4 | |||
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Quote:
I am grateful . . I am grateful to my young primary care physician who diagnosed my condition a few weeks after I presented serious MG symptoms. I have read that others have had to wait one or two years, and see two or three doctors, before they were diagnosed. I am grateful that I only have MG, and not any of the other myriad of conditions or diseases that are far worse and more devastating. I am grateful for the Affordable Care Act which provided me with the opportunity to get quality healthcare insurance. I can now afford the proper drugs and treatment for MG, or any other thing that might crop up going forward. In the past ten years I tried several time to buy healthcare insurance, turned down each and every time. Apparently, fat, 50-year-old taxicab drivers were not a desirable demographic for the healthcare insurance industry. I am grateful that my energy, ambition, and motivations has returned. I had been experiencing chronic fatigue for a few years. At the time I though this was a character flaw, but now recognize it was an early symptom of MG. I was really beating myself up about this, but now beating me up is my immune system's job. BTW, this might be the Prednisone talking. I am grateful that my early, mild MG symptoms forced me to seek out healthcare. I was able to find a great medical group that offered discount prices for self-paying patients. My early symptoms were brief periods of double vision (not something you want in a taxicab driver). It turned out that I had extremely high blood pressure and elevated cholesterol, both of which are now well under control. After my blood pressure came down, the double vision disappeared. I now know this was a MG symptom, which returned in October 2013. I am grateful to having lost 80 pounds, down from 315 in November 2012 to 235 pounds in January 2014, in no small part due to my weak jaw caused by MG. I can't chew very well, and this forced me to develop a better diet. No more cheeseburgers and greasy ribs for me. I mean I am grateful that MG has not impacted my ability to earn a living, at least not to date. And if it does, I will deal with it. And last, but not least, I am grateful for the NueroTalk Myasthenia Gravis Support Forum that brought me to some wonderful people. I've only been here a few days, but already feel like I have found a home. Take care, -Mark- Last edited by Panorama; 01-25-2014 at 07:31 AM. Reason: Chronic Typos |
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"Thanks for this!" says: | Heat Intolerant (01-24-2014) |
01-25-2014, 01:46 AM | #5 | ||
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I'm grateful also. Be well...
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01-31-2014, 09:46 PM | #6 | ||
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Hi there,
Tomorrow or Sunday I will pull out my blood test results and post you the ranges that I was given for each one. When my holistic doc had me get the tests done, she showed me the ranges that we would like the numbers to be in and that if they were high, it meant the condition was a bit more exacerbated/present. I've noticed that when I'm doing good, the levels are lower; and then it's the opposite for when I'm not doing so well. It's interesting to keep track of! I'd check it out now but I've gotta call it a night. But I promise to post the ranges asap. Quote:
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02-03-2014, 08:34 PM | #7 | |||
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Quote:
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02-03-2014, 09:00 PM | #8 | |||
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My MG bloodwork goes to Mayo. My neuro-muscular Dr usually takes 12-15 vials of blood to Mayo
Mike |
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