Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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Medical ID

wgreen19
wgreen19
Though I didn't test positive for any of the standard MG tests, my doctor still thought through all my symptoms that I still must have it, and put me on Mestinon and found some relief. When first put on it, three weeks ago, I was taking 60 mg's four times a day, but now have been increased to 90 mg's four times a day. Now we'll start working on the diagnosis of Sensory Polyneuropothy.

But, through this diagnosis, and continued problems, I am concerned if I were in need of medical attention requiring me to go to the hospital, because I did not go to our local hospitals, but rather one 30+ miles away. Hence, I'm wondering the importance of medical identification? I do carry a medical card in my wallet explaining my prior cancer, and heart attack, but wonder if I should have a bracelet or dog tag better flagging an ER department? Thoughts, suggestions? What are you all doing?
txkiki53
txkiki53
I feel a good idea as I wear a medical bracelet every day... it says I have mg, heart stent, med card in wallet and has my son's cell number on it for emergency contact.
Annette
bweeds
bweeds
I have the MGFA med card in my wallet (my husband has a copy in his) we printed out the ER pamphlet for both cars and ER portion of the Manual for Health Care Providers and have that information also in the glove compartments. I carry the more complete list of medications to avoid with me to all my doctor's visits.

These things are on the MGFA website myasthenia.org and direct links are in our Links Group in the discussion "what to take to the hospital. "
babymoma26
babymoma26
They make medical bracelets that are USB drives. The nice thing about them is you can take them to your doctors and they can put information on them (conditions, medication, emergency contacts, or anything else you want someone to know). If something were to happen, the EMS or the doctors at the hospital can just plug them into their computers and know all your information without you telling them. I plan on getting one of these, as I read they are very good.
sunev1961
sunev1961
The USB idea sounds like a really good idea babymoma. Is there a website to look at? Gez
bweeds
bweeds
You can get flash drives many places online and at electronics stores. The problem some people have run into is gettng the information off in an emergency. It's great once things have settled down and it can be plugged in a computer and read. I like the pamphlet from the MGFA because it is brief and easy to read and covers things that might prevent respiratory arrest, like let the patient sit up, oxygen may cause arrest, etc. Things most ER personnel who are not familiar with MG will not know. b.
wgreen19
wgreen19
Thank you one and all. I'll look at them closer, and get one ordered. It seems the largest fear is that not all doctors, or hospitals are up to speed on MG and therefore could possibly think they are treating one symptom while it's really another. With the ID, it gives them a 'heads up' that there could be something other than a simple straight forward answer.

BC/BS has a discount program, through Blue365, which sells ID bracelets and necklaces.
Knnthsln
Knnthsln
Yes. Wear them, you have nothing to lose. Make sure to get yours and make sure to wear them everytime you go outside. I have a traditional looking one so when the time comes when i couldn't speak for myself, all the first responders can easily spot the bracelet. I got mine at https://www.medicassist.com/ . They're pretty affordable and durable as well. Keep a medical id wallet card on you if you want to add a little more peace in your mind. Take care!