I just bought a medical alert bracelet from a website, laurenshope.com (that's Lauren's Hope). They have lots of styles for men, women and children and the tag is large enough for 5 lines of text up to 20 characters each line. (You can buy one tag and use different bracelets so you can change the style ladies!) The price is pretty reasonable too. Here's what I put on mine:
Myasthenia Gravis
See wallet card
Then I listed my drug allergies.

It came with a wallet card for more information and I keep it with a printout of meds to avoid in MG.

Ur's sounds great cathi! I can only say Christo that the company Medic Alert is well recognised here in South Africa so I can only imagine it would be in most countries aswell. I have one of their necklaces and like Cathi also have a wallet card. However if you were to be in an accident there is a number which the hospital would contact and quote to the company your reference and they would provide the attending physician with all your details and your physician at homes contact numbers as well. Seems a pretty good organisation and I agree that all of us should wear some form of alert. Ange

Thank you for this. I need to order and wear a med alert

My wife has been pushing me to get one since day one...It is a good idea. I should be getting something before too long as well.

Thanks for the reminder of this. We can't just be given this, that, or the other kind of treatment if something happens, and many are unaware of the specifics even if they are medically sound.

Best wishes,

TJ

I got one online at www.creativemedicalid.com that I love! It has my name on the front, then lists medical conditions and allergies on the back. Maybe putting "Myathenia Gravis" and "See Wallet for Medical Info" (or something similar) would work. There are interchangeable band options too, for both men and women. It is easy to read. I also carry a card in my wallet, just in case.

Good luck and Good Health to you!

useless> with our disease

Curt,

I'm curious why you think it's useless. my neuro advised one not only because there are certain drugs that exaberate our condition, but also if we are prednisone dependent it is important for drs. to be aware of this. Wondered if I was missing something.

Judith

I typed a lengthy response earlier and the site dumped that response save for the first few words, hence the truncated reply. Don't understand what happened.

Anyway, I have been in critical situations with this disease with health care professionals who knew nothing about MG. Invariably, their choices in treating me were wrong even though they were told I had MG. When I was struggling to breathe in ICU, I sat up at my bedside so I could get air into my lungs (those who have been in crisis will know what I mean). The RN's response was to send four orderlies in to my bedside with handcuffs to tie me into bed. I woke up a week later, ready to take that woman's head off for her ignorance about the disease and what I was doing. I'll never go code blue in that hospital again. :-)

I was in a crash a year ago. I told the ambulance crew about my MG and they couldn't figure out what to do about it. I told them morphine was fine but they couldn't confirm it, so I suffered...needlessly. Well, not, I should have known better than to crash my motorcycle so I deserved it.

Five years ago, at the suggestion of my neuro, I bought a bracelet for 40 bucks. It was junk. I hate all jewelry anyway but wore it until I got snagged on some frame part under my car while changing oil. I quickly took a hammer to it, threw it in the trash and never looked back.

The only people who need to know you have MG is a neurologist. Anyone else who knows won't know what to do with the information. If you are found unconscious, you will be intubated anyway. You will have something in your wallet for those who need to know. The rest of the world DOESN'T and we're fantasizing when we think these bracelets will ever help us under any circumstance...and may well serve to hurt us. It's probably more a psychological benefit than a medical benefit.

That's my take on the whole thing. Others can choose as they wish.

Just my 2 cents.

Curt

I think the medic alert bracelet is a great idea. Even though MG isn't well known, alerting any doctor or hospital to your condition is wise. My mother has MG and her Neurologist has made it VERY clear that he should be notified before my mother has any surgery. So in case of an emergency, a bracelet could inform the medical community to search her wallet for additional information to help them determine the best possible care for her. Anytime we can help the doctors and nurses regarding our own care (or in this case my mothers care) is a wise idea.

I wear a medical braclet. Paramedics here do not have the time to go searching through your bag for your wallet to gather information. I have listed MG on my braclet because I believe it can't hurt for the hospital to have as much information regarding my condition as they can. Kurt, I get your 2 cents worth that you don't believe it will help you in your condition. I am aware that not every medical person knows of MG but I would rather they had that info than not.

I've worn a Dog Tag Necklace Medical ID since an Allergic Reaction to Yellow Jacket Stings in 08.

Last November I had a Breathing Problem that I surmised was caused by my MG. The Ambulance Crew was advised of the Tag AND that I suffered from MG...it didn't seem to mean much but they let me partially sit-up in the Ambulance. After arriving at the ER, everyone was advised of my MG....& it meant nothing. I indicated my problem was in my throat or at the bronchial tubes....the ER Doc thought that the problem was in my lungs....had them x-ray them showing nothing wrong....Duh.

They NEVER accessed the computer file associated with my Med-ID....& the ER Doc NEVER bothered to look down my throat.

I still wear the Med-ID Necklace, but I don't have confidence that it will make a difference in saving my life if I cannot consciously communicate with anyone.

Steve -

You have caught precisely the essence of my complaint. Medical personnel DON'T know our disease and how to manage us in crisis. They treat us with indifference, if not outright hostility, when we attempt to explain what we need, particularly when we're in respiratory distress. To those who believe an ID bracelet will be of ANY benefit to the MG patient, I believe it is mere illusion. Believing is a powerful force, however, and I don't diminish its value. The placebo effect is real and results in real healing.

Given that I don't believe an ID will help us - and with experiences where the knowledge of my MG by medical personnel has harmed me - and given that I hate jewelry (well, cheap jewelry, I love Rolex watches), you won't find me wearing one anytime soon.

Anyone here ever hear the term "a little knowledge is dangerous?" That pertains to medical people and MG and is worth considering. I've been around medical people all my life - five of my first cousins are doctors, mother and aunts RNs - that I know too well the truth of this statement.

Curt

A bracelet is a good idea. But it is no better than the person who reads it. Getting medical personal to listen is sometimes very difficult.

I keep a copy of my medications, disease symptoms, and medications to avoid in my cars at all times. If there is ever a problem, my family knows to get this info to the care givers and make sure the care givers hear and understand about my condition.

I understand there are even medical emergency computer memory sticks when can store lots of your medical information. I would be caution with a memory stick!

I've given a lot of very serious thought to this topic and was just discussing it with one of my buddies who was with me at bedside when I was in a coma with this disease three years ago, and the sequence of events surrounding my going into the coma. It was because of the failure of a trained RN in ICU to understand my disease and to recognize the symptoms of an MG crisis until it was too late. I went code blue. What made this failure in her assessment, or lack thereof, all the more frightening was that I was under her care for 48 hours before going into respiratory failure, giving her plenty of opportunity to study up on my screwy disease. Instead of giving me oxygen, she sent four goons in with handcuffs to tie me down in my bed. Then, all went black.

I will NEVER wear an ID bracelet or provide any information to caregivers about my MG. I believe I am better off being treated as if I were just anyone else on the street in the event of an emergency. I believe any info that tells an emergency worker anything about my MG is a dangerous distraction and can cost valuable minutes that could be used to save my life.

I think MG victims spend too much time and mental energy thinking about their uniqueness and how this drug or that can cause an exacerbation of symptoms. In the end, I think it is all hogwash and we are much safer if treated as they would treat anyone else in crisis: ie, if we have stopped breathing, intubate us, get us to the hospital and get us to a neurologist.

These comments aren't flippant and don't come from a casual observer but from someone who has been in every dark corner MG can take us.

As a result of this discussion, I have just removed all information from my wallet about my having MG and my list of drugs. I don't want to be a victim of medical incompetence ever again. This is an informed decision, not just casting fate to the wind.

Curt