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 don't have a medic alert bracelet. Thanks for bringing this up. I need to look into that. I wonder if they make ones that are standard for MG.

The bracelets have a code on them that emergency personnel can access that will give any info you've submitted to the bracelet company. EMTs and ER people are trained to look for the bracelets, but it would definitely be a good idea to keep a copy in your wallet as well.

Hope this helps.

Hi all,

When I saw on here about a year ago, right after my diagnosis about wearing a medical bracelet, I asked my G.P.

He told me I didn't have any reason to go that far. I listened to him, but I still question myself about my decision.

He doesn't know much about MG as I was the first patient he diagnosed. I took a picture of myself to him while I had ptosis. He then done the proper
bloodwork. Alas I had a name to the monster, finally. It had been 6 years....

So do many of you guys have a medi-alert bracelet? Do you think it is necessary?

Thanks lots,

Deb

Seishin, I have a medical alert "card" in my purse/wallet. It's more like a medical alert anthology.

The basics you should have on it are:

Name, date of birth, address, emergency contact name/numbers and health insurance coverage information.

You should have any drugs you are on, their doses and when they are taken.

I have the names and phone numbers of all of my doctors, including what their specialties are.

You should list your current conditions, any past surgeries and hospitalizations and any allergies or contraindicated drugs/foods. If you've had reactions to foods or drugs, list what they were (i.e., hives).

I have a very basic list of drugs and foods contraindicated in MG.

And, yes, I have a special little box that describes the basics about an MG crisis. I also have, "When in doubt, call my neurologist and pulmonologist."

The hospital closest to where I live has this information. I don't rely on that since it does change, so that's why I keep a copy with me.

While we're on the subject, if you guys don't have a health directive or wills in place, that's a good idea too.

Annie

Seishin, thanks for asking this. i have been wondering the same thing. After my fall, I am afraid of falling again and if unconscious or having slurred speech afraid that an ambulance attendant or ER might administer the wrong thing.

Let me know what you decide to put on your.


thanks
kathie

I am very new to all this, I just learned a week ago that I have ocular Myasthenia Gravis. I found this ID card which might help (they won't let me attach a link as this is my first response). A friend who is an EMT said if the bracelet said Myasthenia Gravis they would know what to do.

One thing that I've done is I have removed the standard passcode on my cell phone to a simple swipe to unlock it. I have an ICE contact. I don't know if this is 100% true but I was told that this is a way for emergency personnel to know who to call IN CASE OF AN EMERGENCY.

I think it is definately necessary to put
Intubate for Myasthenia Gravis' (Only if trouble breathing)
'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.

Hi everyone - I just got myself a bracelet and like you all, I didn't know what to put....and found the space very limited!! I also questioned whether medics would have the time to scan one of those chips in an emergency!! I wanted a sports -type bracelet because of my work and children and I found these :

http://www.theidbandco.com/Medical-ID-Wristbands

You can write all of your emergency contact/medical/medication info on the front and then there is a plain side to put your own info on - I put on "if difficulty breathing pulse ox is NOT reliable - if in doubt Ventilate" also my Neuro's details and I must add about anesthetic!! The card then folds up and tucks safely inside the bracelet and they also send a spare for changes or if the first gets damaged or fades.

Shishin - Is the word you are looking for "Supine" ?? I know they put on my notes not to lie me Supine when I was pregnant - which I believe is flat??

Hope you're all well
Eve.x