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.

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

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.

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

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.

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.