← Return to Undiagnosed Autoimmune Disease - No one will listen to me

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@carsoncreek

My daughter is 42. She has hives, which now turn into bruises/marks when they clear up. She has terrible and random joint issues. One day, she may wake up and can't move fingers on one hand, or can't stand on a knee. It may last a few days, and then goes away. Iowa City has tested her, and determined she has "some kind of autoimmune disorder (but they don't know what). I've seen some of her test results. Some of them are off the charts, they are so high (like for inflammation). She is currently on 4 different antihistamines, daily, just to keep the hives away (and it doesn't always work), and keep from digging her skin to death. I was recently diagnosed with Sarcoidosis. We are trying to get her Dermatologist to do testing for that (her regular doctor told her it is rare and isn't proceeding). It can run in families! We will keep advocating, until she gets answers, but she has been suffering for well over a year. It is so frustrating. Mayo can't take her right now. I am praying that if she gets diagnosed with Sarcoidosis at Iowa City, she can get accepted to Mayo on that basis.

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Replies to "My daughter is 42. She has hives, which now turn into bruises/marks when they clear up...."

@carsoncreek Your poor daughter. How frustrating to feel awful and get no answers. There are so many autoimmune diseases now and many of them are new. If Mayo Clinic is still difficult to get into, you can try university hospital or the Mayo Clinic Care Network:
https://mayoclinic.org/about-mayo-clinic/care-networks/members
Another good link for Mayo appointments:
https://mayoclinic/1mtmR63
Will you stay in touch and let me know how everything is going?