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Old 08-25-2019, 02:05 PM
levisanz levisanz is offline
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Join Date: Aug 2019
Location: Kingston, Rhode Island
Posts: 11
3 yr Member
levisanz levisanz is offline
Junior Member
 
Join Date: Aug 2019
Location: Kingston, Rhode Island
Posts: 11
3 yr Member
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Quote:
Originally Posted by seishin View Post
I'm attempting to clarify what sort of language I might put on a medical alert ID bracelet.

I don't want the bracelet simply to say 'Myasthenia Gravis' since that means (next to) nothing to medical staff without practical experience in the handling of MG. I want it to give base instruction with concise wording for proper care to counter likely gaps in knowledge one might encounter in an E.R.

Ideas I'm brainstorming:
'Intubate for Myasthenia Gravis'
'NO neuromuscular relaxants. Check wallet for contraindications'
there's a medical term for sitting a patient upright rather than lying them down in the hospital bed... I'd want that word on the bracelet, too.

1. What do you have on your bracelet or pendant?
2. What do you wish you had (phrased concisely) on your bracelet or pendant?
3. Besides a complete list of contraindications, do you carry any additional guidance for medical staff or yourself regarding proper MG care? If so, what does it say? (e.g. I came across a thread earlier from Jana who keeps a note reminding herself to to ask for a Vital Capacity (VC), Negative Inspiratory Force (NIF), Maximal Inspiratory Pressure and Arterial Blood Gas (ABG) if needed, as well as a suggestion to try CPAP or Bi-PAP first before intubation.)

Thanks.
I have been struggling with this very question.

Currently I am on hold because I am newly diagnosed with Generalized MG and currently taking Mestinon but I know at some point I will be on Prednisone and possibly Imuran.

Once I am taking meds more consistently, I’d like to put my name, diagnosis, meds I am taking and emergency contact person.
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