TinTN
10 post s
19-Aug-2008
7:10 AM
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I just received my first prescription of Mestinon. When reading the included information about the drug, it stated:
MEDICAL ALERT
Your condition can cause complications in a medical emergency. For information about enrolling in MedicAlert, call .........
Is this necessary? If not necessary, isn't this a really good idea? The more I learn about MG, the more I understand that others (including doctors) know very little about this medical condition.
The thought of I ever experiencing a myasthenia crisis is very frightening to me; but the thought that my local emergency room wouldn't know what to do with me is terrifying! Any advice from those with more experience and knowledge would be most appreciated!
Last Edited on 19-Aug-2008 7:17 AM
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scottyd
33 post s
19-Aug-2008
7:47 AM
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Hi TinTN I think the idea of carrying info on MG is an excellent idea. MG is not well known and there are a few safety messages that anyone treating you should know. In UK MGA supply a small purse size info card for MG sufferers which not only identifies the illness but includes advise on problematic medications. I carry mine in my wallet and when I was with my GP a few weeks ago re a chest infection we used it to ensure the antibiotic he was suggesting was suitable. So anything which gives you assurance on proper treatment is worth the effort. Derek
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chairman
MGA Chairman
848 post s
19-Aug-2008
9:01 AM
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TnTin The pros and cons of this have been extensively discussed before in this Forum. If you do a search on 'medicalert' I think you will find what you need to know.
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 Peter Finney
MGA Chairman
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TinTN
11 post s
19-Aug-2008
11:47 AM
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Derek, Thank you so much for your supportive comments. I live in the states where there seems to be very little understanding of this medical condition. Chairman, Sorry, sometimes I forget to check the search feature! You're right, it has definitely been discussed many times. However, I am still unsure of what I should do. This disease is so new to me that I am constantly confused.
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scottyd
34 post s
19-Aug-2008
12:16 PM
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Tintn Have you tried the Myasthenia Gravis Foundation of America website to see what support they offer. I take it from your id you live in Tennessee. Will be in New Jersey myself next week but have been in Tn before; love Memphis. Derek
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smea
11 post s
19-Aug-2008
2:20 PM
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I use a wrist band called SOS Talisman which holds info about my condition & medication, and the finder therefore does not require to telephone for information (e.g. if I am unconscious and /or in a remote location outwith mobile phone coverage.
Last Edited on 19-Aug-2008 2:22 PM
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Bogart
13 post s
19-Aug-2008
5:02 PM
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Some people are concerned with discimination and choose not to inform their employer. This poses a problem in terms of being able to wear it.
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Jonesey58
4 post s
20-Aug-2008
2:18 AM
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Further to the SOS talisman. Having recently been diagnosed myself and being on both mestinon and steroids I went for the option of a SOS talisman necklace, rather than a bracelet/wristband. It doesn't seem to get in the way as much. However it is still an obvious indicator to anyone medical. I also make sure both I and my wife carry a card with details of the exact dosage I am currently on together with doctor and neurologist details. Just a little thing - if you do go for these things in a metal, can I suggest the stainless steel option to try and avoid possible skin reactions and tarnishing through the effects of the body/medication.
Last Edited on 20-Aug-2008 2:23 AM
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sally1louiselouise
599 post s
20-Aug-2008
4:39 AM
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I too wear the SOS Talisman necklace, easier to wear than the bracelet. I chose this option as all the medical info is contained inside it and saves the time it would take to ring for the information on the Medicalert disc. It is recognised by all medical professionals, when I got mine it also contained, car stickers, luggage stickers etc. I also carry the MG In Case of Emergency Card which is available from MGA Head Office.
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South Wales
UK
Last Edited on 20-Aug-2008 4:42 AM
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Rita
97 post s
27-Aug-2008
7:08 AM
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No help to you in the States I'm afraid, but those of you in the UK don't forget that local Lions groups will support you with the provision of medic alert via your branch. Ask the local secretary to make an application
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