I have gone to the ER only twice because of my FSHD. They were both due to falls that happened when I was alone. I rode in the ambulance, received a CAT scan and spent countless hours waiting to be seen then discharged. I wasn’t entirely comfortable during my ER visits. Not because I was in pain but due to inaccessibility. I didn’t feel comfortable moving from the gurney to the scanning devices and I felt the hospital staff weren’t adequately trained to deal with someone with mobility issues. I felt more pain due to being picked up in the wrong way.
How many times a year do you go to the emergency room? Have your visits to the ER been due to your Muscular Dystrophy? What have been your positive and negative experiences in the ER? Do you find it to be accessible for you?
Let me start by saying that ER visits are always a horrible pain. There are long waits and it’s all about expediency and moving you along. And the bill is never small. I have been there a couple times in the last year and a half because of falls. The last time, after a badly dislocated toe with a small break was put back in place they wanted to do a second round of xrays. After waiting hours I walked out. I figured even if the tow wasn’t set perfectly that left leg is so weak I really can’t push off the toe anyway. I’ve been fine amid feels like it’s healed well.
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