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Old 07-17-2011, 10:22 AM #11
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....the greater mystery it is why they would start my son on 60 mg....

Probably because that's the size of the "normal" pill.....

I think I read somewhere that only 600 people per year are diagnosed with MG - most hospital staff don't know that much about it, and most of them don't know the symptoms of a Mestinon overdosage.

Since he was in an emergency situation, there wasn't time for them to experiment with fine-tuning; since he had a stomach bug, they probably attributed his nausea to that rather than the Mestinon.

Now you will have time to figure out what dosage works best for him, and get it on his medical records.

I'm so glad that you are having a positive experience - it makes all the difference in the world!
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Old 07-17-2011, 10:31 AM #12
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They ran a genetic CD test during the hospitalization, and it came back negative, so that is definitive.

Please be aware that the CD test will ONLY pick up Stage III or higher damage to the intestinal lining. A person may still have damage to their intestines and/or be sensitive to gluten without a positive test result. Also, gluten's effects are cumulative, so a person can test negative one year and positive a couple of years later (our daughter tested negative when she was 3; her numbers were off the chart when she was 7) - just something to bear in mind.

That doesn't necessarily mean that he has that problem, but it's important for people to know what the test parameters are.

You may want to read up on Gluten Sensitivity, as gluten can cause real problems in people who are sensitive to it. Researchers in the Celiac field are starting to have lots of people coming to see them who don't test positive for CD, yet find great relief of their symptoms on a GF diet.

I'm just throwing this out there - MG is enough to deal with, without having to deal with another condition on top of it! I just know that a GF diet has proven beneficial to a lot of people on this board....
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