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...
As luck would have it, I ran into a now retired ICU/ER nurse today. Naturally the discussion turned to MG and any advise she could offer us.
I showed her the info pack I keep in my pursethe 'in case of emergency' cards that I copied from the MGFA website. They include info needed for first responders as well as a list of meds that will make us worse, meds now taking, allergies, other diagnosis' etc.
Her suggestion was to add a letter from your neurologist that is directed to the attending ER doc.
It should include diagnosis, meds and treatment plan as well as an emergency treatment plan. It should also have the emergency contact number of the neurologist. She has seen them in her career and told me that they can be a lifesaver for us.
I also live a great distance (5 hours through the mountains) from the nearest MG clinic, and the chances of running into a doctor that is local and has no experience with MG is very very high. I am thinking such a letter in my purse at all times may save my life one day, or at least make an emergency visit less stressful.
Deb
I showed her the info pack I keep in my pursethe 'in case of emergency' cards that I copied from the MGFA website. They include info needed for first responders as well as a list of meds that will make us worse, meds now taking, allergies, other diagnosis' etc.
Her suggestion was to add a letter from your neurologist that is directed to the attending ER doc.
It should include diagnosis, meds and treatment plan as well as an emergency treatment plan. It should also have the emergency contact number of the neurologist. She has seen them in her career and told me that they can be a lifesaver for us.
I also live a great distance (5 hours through the mountains) from the nearest MG clinic, and the chances of running into a doctor that is local and has no experience with MG is very very high. I am thinking such a letter in my purse at all times may save my life one day, or at least make an emergency visit less stressful.
Deb
It is also imperative that someone else be aware of what info we carry and where it can be accessed in case of emergency.
Great idea Charlie!
I need to do this
What a great heads up to not only keep that info with you , but keep it updated.
Charlie , your bracelet with the chip has really got my attention. Is there a specific brand that you bought? Thanks , Cj