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I anticipate going to the ER later this week for a more severe migraine that doesn't want to go away. Migraine Cocktail Infusion I had last week failed.

August 31
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A MGteam Member

I always bring my own pajamas. I used to ask if it was okay but after so many hospital stays I just put them on and no one gives me a problem. Just wear something that buttons or has a v-neck so they can get to the heart monitor if necessary. I also bring my own blanket. Hospital blankets are worse than hospital gowns!

September 20
A MGteam Member

Jay,
Our treatment trials are difficult and, if you are at all impatient, seem to take too long. I’m not sure what dates you were in the hospital and what was decided about your treatment. I am writing this note on September 20, for reference.

Currently I am on IVIG after months of no improvement . I will describe my IVIG experience so that you might have a little hope.

My IVs are administered at home once each month on three consecutive days. Conveniently, an infusion nurse comes to me and stays all day to monitor. I also get premedication. I have just completed my third month and have noticed a slight improvement in strength and energy. (No improvement yet in balance or head drop.)

No miracle, but some progress. A few people in my neighborhood have stopped to tell me I even look better. Wishing you find the right meds and see good results.

September 20
A MGteam Member

So I have a to go bag at all times. I have some pajamas toiletries ear plugs, change of clothes, phone charger, neck brace, and some snacks. Oh yes eye cover for sleeping.

September 17
MGteam

Preparing for a hospital visit with MG takes a little extra planning, but being organized can make a big difference in the care you receive. Here are the must-haves to bring:

Medical Information
- A list of your current medications
- A list of medications that can worsen MG (this is critical for ER staff to see)
- A list of Show Full Answer

Preparing for a hospital visit with MG takes a little extra planning, but being organized can make a big difference in the care you receive. Here are the must-haves to bring:

Medical Information:
- A list of your current medications
- A list of medications that can worsen MG (this is critical for ER staff to see)
- A list of your allergies
- General medical history summary
- Your neurologist's phone number
- Emergency contact information for family or friends

Identification & Documentation:
- Medical ID bracelet or emblem identifying you as someone with MG
- An emergency medical alert packet from the Myasthenia Gravis Foundation of America, which explains MG and lists medications

Practical Items:
- All your current medications (keep them with you, not in a checked bag or left at home)
- Any assistive devices you rely on
- Comfort items for rest and recovery One MGteam member shared about their medical alert card: *"I used to carry one in my wallet. It would help medical personnel when I couldn't answer multiple questions."*

This is especially important in an ER setting where you may be fatigued or struggling to communicate clearly — both very real possibilities with MG. Wishing you a smooth visit and some much-needed relief soon! 💙

August 31
A MGteam Member

It's like a big warm hug!

September 20

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Mt. Vernon, NY