Medical ID bracelets
 

So, I was diagnosed about 6 months ago, but have been fighting symptoms for a year or more. I have yet to have a Myasthenic crisis, but the more I read. It appears they are fairly common. Do any of you wear medical IDs for MG and do you recommend getting one?

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A medical alert bracelet (and card in a wallet or purse or in a hospital chart) is smart for everyone to have. It's a good idea to let any local hospital know not only that one has MG, but what treatment a patient's neurologist recommends in case of a crisis. Some hospitals don't have a clue what to do.

Not everyone has a MG crisis. I think the vast majority of them are from being under treated or pushing one's body, or overdosing on Mestinon. Of course, they can also happen from lack of sleep for too long, infections, undiagnosed thyroid conditions, surgery, anesthesia, and so many more reasons, such as taking contraindicated drugs like quinolones!

Sometimes newly diagnosed MGers think that once they're treated, their lives can go back to normal. Then they overdo and become much worse. And that process of becoming worse can be so gradual that the body might not notice how severe things have become.

If an MGer is one of those who has significant breathing issues, it's also smart to have baseline pulmonary function testing done, including MIP and MEP. A pulmonologist works with a neurologist in a hospital setting to treat a MG crisis.

An oximeter can be useful for those of us who have larger fluctuations in chest wall muscle weakness. It's one more indicator of how we're doing. But it alone cannot fully show how a MGer is doing.

A pulmonologist can also do an arterial blood gas if a MGer is becoming worse. They may also recommend an overnight oximetry to see what the O2 is while sleeping. Everyone's O2 is worse at night because the muscles become weaker while sleeping. During my MG crisis, my O2 was 66% while sleeping.

I hope that info helps.

Annie