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.

Seishin, thanks. Have you considered one of the medic alerts bracelets with a service where they can call in and get more info?
kathie

I've considered it. My concern is that, in an emergency situation, initial medical treatment may take place before a phone call is made or USB card is reviewed which can result in detrimental care for one with MG. I'd feel more secure with basic information & guidance on a bracelet. I'd also feel more secure knowing information is on-hand (literally) for the rotation of nurses responsible for ongoing care if I'm admitted to the hospital. The bracelet could reinforce info which might be overlooked in a medical chart.

I personally would not write "intubate for myasthenia gravis" because they won't have a clue what that means and they are not going to intubate you because your bracelet says so. Just saying you have MG is very helpful. My son is an EMT and in an ambulance they are lucky if they even check for a bracelet (they usually don't.) In an emergency setting they are only to read a couple of words. Having more info they can access when they are gathering more info is great.

I thought that one that said the following would be good.

Myasthenia Gravis
Support Respiration

What do you think?

Stats I came across:
"American Medical ID recently surveyed emergency medical professionals ranging from first responders to paramedics. Among the results: More than 95 percent of respondents look for a medical ID during emergencies. More than 75 percent look for a medical ID immediately upon assessing a patient. 95 percent look at the patient's wrist to find a medical ID, and 68 percent look for an ID on the patient's neck."

Odds are good the ambulance crew or ER doctor will notice the bracelet.

Recalling a comment made by AnnieB3: "A well-known MG expert said ... it takes an average of one year for a man to be diagnosed with MG but an average of seven years for a woman to be. " Stats like these indicate unfamiliarity with the disease. I feel more comfortable directing EMT or nursing staff about what to do rather than what I have. If I'm gasping for air, I don't want my respiratory distress to continue unabated or be aggravated by their pushing me down onto the table, telling me to relax or Googling MG. If by chance they see my bracelet saying 'Intubate for MG', their brains (hopefully) will tell them, "Hmmm... maybe I should intubate for MG" which could hasten proper treatment. I'll bet the ponies it's more helpful than hurtful.

southblues: "Myasthenia Gravis - Support Respiration" -- I like it.