Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.

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Old 12-21-2013, 02:36 PM #21
BackwardPawn BackwardPawn is offline
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I really should get a medical alert bracelet. Between the two diseases I have, I need prednisone, valium, mestinon and oxy or I'll end up in severe withdrawal and then die of adrenal insufficiency or suffocate.

I was thinking of getting either a bracelet or dog tag with the conditions engraved and the I need. Then having a card in my wallet with the full list. I think a dog tag would fit more info engraved on it.

There is a service that gives you a bracelet with an ID number and the medic can look up the ID number and get everything online. I'm afraid they won't take the time, though.
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Old 05-01-2019, 07:51 PM #22
MaYa1234 MaYa1234 is offline
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Hey, to anyone who is wondering, the best position I have found for MG patients is the Semi-Fowler’s position which is half-way between sitting and lying and it’s usually used during respiratory distress to attempt to improve breathing, whether that be with or without a ventilator.
Maya
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Old 08-25-2019, 02:05 PM #23
levisanz levisanz is offline
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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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Old 10-21-2019, 11:55 AM #24
EricTheRead EricTheRead is offline
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The position to put people in - called sitting up, is called "Fowler's Position". If you are semi-reclined, it is called "Semi-Fowler's Position".

People who have COPD are frequently placed in this position to ease breathing.

The condition of having trouble breathing when lying down (supine, for example) is called "orthopnea".

Earlier in the thread, someone was looking for a C-word related to this. COPD patients do better in Fowler or Semi-Fowler position, I understand. That might have been the C-word .

Hope that helps.
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