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.

I have Myathenia Gravis and worked on an ambulance for 6 years.

My advice is to get a Medic Alert subscription, they have programs for low income people. Get a bracelet and wear it daily. Even in the hospital, the medical people will flip it over and read it on your wrist. and they pay attention, they take that bracelet seriously.

I knew what MG was when I worked on the ambulance and did not have it. It was talked about in our classes.

On my bracelet it says Myasthenia Gravis, Use drug precautions. Which says to the med people they need to be very careful giving meds. that's something they can not know without the bracelet.

Any trained medical person can see you are having breathing difficulties, there is no need to put that on the bracelet.

In an emegency I would NEVER open anyone's purse or wallet. We just handed them to the cops immediately. they didn't open them either. No one wants to be accused of stealing. often purses and wallets are never opened.

My advice is get a bracelet, they are easy to see and medical people in all situations pay attention to them.

Medic Alert has a phone number, anyone can all it and they will pull up your information and help the medical people.

that was really the best service we used when I worked on the ambulance, it is the only one I would recommend. even their international service is outstanding.

Medical ID card
 

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.

Myasthenia Gravis alert!!!
 

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 :hug:
Eve.x