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Old 05-01-2018, 05:33 PM #7
AnnieB3 AnnieB3 is offline
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Join Date: Feb 2009
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AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
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Bill, I would definitely have your B12 checked right away. I know that GABA has been thought to help that condition, but B12 can be supportive as well. There were even a couple of studies I saw years ago that implicated the strep bacteria in the illness. Some people have a high ASO or strep titer.

Also, B12 is necessary in the metabolic pathway that prompts acetylcholine (ACh) release.

You don't know Mrs. D, but she was a professional in the medical field (retired) and her sources are impeccable. If it were me, I'd get a desk cycle or some such thing and do a bit of exercising with a bit of diet mod, instead of nasty drugs.

Did you know that steroids can cause depression? So can a higher acetylcholine level. Low AChR, we are weaker. Too high, we're depressed! Too much fun!

Be careful about doing surgery. That might help. But the drugs alone could tank MG. And the muscles will become stressed and will still be weak. There's a lot to consider with a surgery such as that. Your vision could become worse. Whatever you do, don't do Botox (that can tank MGers as well, given that Botulinum toxin can cause MG).

Diabetes is an Afib risk. So is sleep apnea. Sleep apnea is also a cardiac risk. So, yeah, find a very good cardiologist!

Many drugs can make MG worse. Go to Home to learn more.

When you saw the pulmonologist, did they do the MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure) tests? Your lungs might be clear and healthy, but the chest wall muscles are what pulmonologists need to track. Know what your normal numbers are can help figure out if MG is tanking. For example, my normal MIP is about -84 (MIP is shown in a negative, MEP in a positive). Right before my MG crisis, my MIP kept declining upon each try. In the hospital, my average MIP was -24. When that reaches the mid to low -20s, that's the time intubation or a BiPAP is used—patients might stop breathing! Neurologists and pulmonologists work together in a hospital setting to help MG patients. Neither of them is qualified to do the other's job! Other tests pulmonologists can do if MGers are becoming worse: O2 saturation (after walking for a bit), arterial blood gases, and overnight oximetry.

MG does have a high learning curve, such as knowing that heat can make us far worse. MG isn't a fun disease, but I try to ignore it and live the best life I can!

Annie

Last edited by AnnieB3; 05-01-2018 at 06:49 PM.
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