Negative Hospital Experience With MG?
Have you had a negative hospital experience with Myasthenia gravis?
Did the staff not have familiarity or knowledge with treating a patient with MG?
How did you get through the ordeal?
How has this impacted your hospital experiences since?
My hospital doesn't understand about MG at all. They gave me meds that caused a allergic reaction then would not believe what symptoms I was having. Needless to say I checked myself out at 4 am without any help. Haven't been back to the ER since.
Unfortunately, many doctors and emergency departments are unfamiliar with MG, especially in enough detail to properly care for patients. Here is an excellent guide to some, not a comprehensive list, of the cautionary drugs with MG to have in your back pocket: https://nebula.wsimg.com/903ebe2c701eb4e72e3211dc9fb9064e?AccessKeyId=7F50FBE19A111D19DDAC&disposition=0&alloworigin=1.
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If you are experiencing any of the symptoms mentioned in this article, https://myasthenia-gravis.com/living/emergency-room-decision, you should go to the emergency room. However, most hospitals are not equipped to treat MG past intubated and put on a ventilator to keep one breathing if MG is disrupting breathing. But an MG crisis can always progress to this point. Hence, if other symptoms start worsening, it is time to head to the hospital to ensure your well-being.
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Are you recently diagnosed, undiagnosed, or on MG treatment?- Jodi, Team Member
Many ER visits still keep me awake at night to this day. I’m a RN myself, however never mention. I have had an attending attempt to do a baker act on me when my neuro was on vacation. I’ve been made fun of, refused O2, refused help eating, bathing and getting to the bathroom. I’ve been told so many times if you would calm down none of this would be happening as my chest was getting to weak to get a full breath. I’ve had to wait over 24 hours to get my first dose of mestinon. I’ve been told you can leave if you would like, we’ll print the AMA paperwork and hold the door open for you. I didn’t have the strength to even speak up, nor could I walk. I’ve collapsed in the street walking out of an ER I was afraid I would die in if I stayed. That was the night my first seizure happened. A passerby called 911 and took me to another hospital and Ivig was started asap and I was hospitalized 5 days. Many times I don’t go to the hospital when I’ve needed to because I’m to weak to talk and definitely to weak to argue about why I need O2 when I’m sating 94-95. They don’t care that I’m on 02 at home. Many nights I’ve been afraid I won’t wake up, but would rather die in peace than the nonsense of proving I need treatment. I even carry all my paperwork. If I’m not at my neuro affiliated hospital, treatment is always delayed with the exception of 1 ER in TN, while commuting home to FL
I live in a small rural community with only 1 hospital in the entire county. After a few ER visits the ER Chief just came out and told me, “Don’t bother coming here anymore for MG related issues, we can’t do anything for you here.” He explained that they were not equipped nor have staff, either working or on call, who are knowledgeable enough to deal with MG related emergencies. Unfortunately all but one of the local EMS departments are volunteer and have policies requiring transport to the nearest ER. I went to each one personally with a written explanation from that ER Chief and explained what MG was and how critical time can be if I went into MG crisis. Every single one of them understood and issued memos to all EMS personnel that I was an exception to the rule and to transport me to where ever I or my family instructed the to. Granted the nearest ER with the ability to treat me is 60 miles away, but at least now I’m not waiting in an ER who can’t do anything for another ambulance to transfer me. I send my deepest sympathies that you're having to deal with this dilemma. Is the local hospital refusing the use of a ventilator, oxygen, and/or IV fluids because you have MG, or is it IVIG or MG treatment you seek in the emergency visits that they are unable to provide/don't have available?
- Jodi, Team Member
