← Return to Sick daughter goes undiagnosed

Discussion
ghennel avatar

Sick daughter goes undiagnosed

Just Want to Talk | Last Active: Sep 5 10:35pm | Replies (50)

Comment receiving replies
Profile picture for ghennel @ghennel

She was diagnosed with gastroparesis. However, we think that's just a part of what is going on. She also has hormonal problems. She was basically in menopause and was told she would never have children. She had a baby boy two weeks ago. An unexpected surprise blessing. Very rough pregnancy but both are doing well. She struggles with anemia. During her pregnancy it was so bad she had to have weekly infusions. She also has inflammation that pops up randomly. Especially her rib cage and breast bone, but is only on one side of her rib cage. She looks lopsided when this happens. There are all kinds of other little strange ailments that come and go. Ehlers Danlos runs in my family, the hyper mobility type. My dad and aunts have it. I have mild symptoms but was never diagnosed. Some doctors say it could be, others say no. The GI issues are the hardest part of her issues. There has to be a common denominator somewhere. The amount of doctors and ER visits and tests she has had are unbelievable. Every doctor and specialist agrees something isn't right. But never any solid diagnosis Part of the problem is doctors don't communicate with each other. Another issue is they will prescribe something to help, her gastroparesis is so bad she does not absorb anything like a normal person. So who knows what dose she is actually absorbing? If it's not an IV, it really does not help. And try to get a doctor to listen when she tells them that. She kind of has things figured out where she can get by. Every day is different. I still feel if she could get into a place like Mayo with a team, maybe a solid diagnosis could happen. Thank you for asking. Sorry for the long reply!

Jump to this post


Replies to "She was diagnosed with gastroparesis. However, we think that's just a part of what is going..."

@ghennel @cristobalh It really sounds like your daughter has seen every doctor and had every test there is! Has she been going to a university teaching hospital? When I was so sick, my husband called the university hospital. They were able to see me and knew what was wrong when ALL the doctors in our town had no clue! Do you know of a university hospital in your area ? A comprehensive medical center would work just as well.
Do you think this a reasonable suggestion? Will you let me know what you decide?