I have Ehlers-Danlos. Mine has progressed to needing to leave a job I love, as I can no longer work. I own a power wheelchair and have spent months in it, but I can currently walk. I had a stroke at 33 and I'm currently seeking diagnosis and treatment for Mast Cell Activation Syndrome (a common co-morbid condition with EDS).
I've been hospitalized for malnutrition and been on elemental diets. About 2 months ago, I was hospitalized and scheduled for a port to be placed to receive TPN (IV nutrition). The doctor tried a "Hail Mary" and got me eating some foods again while taking vast quantities of antihistamines. ...but, that is no longer working and this week I haven't been able to eat *anything* without needing a rescue epipen.
I have a GI specialist at Northwestern who I will see in mid January. I'm hoping she will have some solutions for me.
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So you know who just said that:
I am female, I am married
I have two children (one AS and one NT)
I have been diagnosed with Aspergers and MERLD
I have significant chronic medical conditions as well
22 Dec 2016, 10:17 am
