Medical Alert ID Bracelet & Notes in your Wallet/Purse
 

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.

Bracelets
 

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. :hug:

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

Annie, thanks so much for content suggestions on the wallet/purse Anthology and reminder to have a health directive & will. My friend/caregiver & I have discussed their importance but haven't taken necessary steps to get them in place. I appreciate the nudge.

southblues, I've done a lot of research on medical alert id bracelets for MG. The pre-printed bracelets say 'MG' and that's it. MG'ers who have experience wearing these bracelets in emergencies complain of being put near the brink of death since medical staff didn't have the knowledge (or time? initiative?) to find out what that means with regard to care. Some patients weren't intubated, or received neuromuscular relaxants which worsened their condition, or were physically pinned to their beds by nurses -- thus preventing them from sitting up to breathe. Predictably, the negligent care aggravated rather than aided them in crisis.

I feel much of this negligent care can be prevented with enough basic info on a medical alert id bracelet/pendant to nullify some of the ignorance we encounter about the disease. Providing medical staff with basic guidance on our handling can make the difference between life & death for MG'ers. So my answer to dewcole is that it's very important to wear a medical alert id bracelet or pendant.

Prior to beginning medical intervention, medical staff don't always have or take time to look up medical information contained in alert id data chips or in someone's wallet or purse (which could also be missing from the scene). I forget the exact percentage (in the high 80's or low 90's?) but well over a majority of emergency medical staff look for alert id bracelets or pendants. I want ON MY BODY basic information to keep the emergency staff or nurse or whomever from worsening my condition through inadvertent negligence or ignorance.

I'm hoping there can be a brainstorm of ideas on what the medical alert ID tag's content might be.

By the way, does anybody know the word I'm looking for, it might start with the letter 'c'. It's the medical term to describe 'keep patient upright to breathe rather than reclining'?

Thanks for everyone's input. Please keep it coming.

Yes you should definitely have one! Here's one reason alone...I just got discharged from a myasthenic crisis. I had to have a spinal tap while in. The anesthesiologist who did the tap took the time to tell me that if I ever need surgery or anesthesia for any reason it's imperative I tell them I have MG, because anesthesia can have deadly complications.

Imagine if you were in a car accident and needed surgery, or something like that. For that one reason alone they need to know you have MG. There are many others.

Now with that said I really need to get a bracelet myself!

Seishin,

So how much space/character is their on the bracelet and what so far have you decided it to say?

kathie

Honestly, I was hoping to get more input ideas from others in this thread, like a brainstorming session. I'm new to a MG diagnosis & don't want to overlook what might be important.

So far, I'm thinking to include:
I'm hoping for ideas or suggestions for adjusting content on the bracelet.

Much more detail will be in my wallet as suggested by AnnieB3:
The largest standard medical alert ID tag I've found has space to engrave four lines of 14-character text on the front & five lines of 20-character text on the back. The alternative, a friend might make the bracelet for me where the tag is more of a small medical ID charm with the text hand-engraved (very legibly) on the body of the bracelet.