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Sick daughter goes undiagnosed
My 26 year old daughter has had on going health problems since her teens. She has been from doctor to doctor and no once can seem to pinpoint what is wrong with her. She weights 89 lbs, can't gain weight, has chronic pain in her abdominal area and a small mass that can be felt. She has had 4 MRI's which found nothing. She lives in Arizona and was in the Scottsdale Mayo ER, they thought it was an ovary or endometriosis and they did an ultrasound, blood work and pelvic exam. Found nothing, sent her home but told her to come back if things got worse. They never get better. I wish they would have looked further to see what the problem really is if it isn't female issues. She is so slim you can feel there is something going on, a mass. She also gets chronic inflammation in her rib cage on one side, on and off. No one can explain that either. Her blood work shows she produces very little progesterone. No one really has done anything to address that. Her diet is very limited because she gets ill very easily. She gets night sweats that soak her sheets just about daily. She runs low grade fevers frequently. She has had many tests done over the years, and while things may come back "slightly" off, no one has a diagnosis or explanation for why she is chronically sick. The chronic pain is affecting her mental state as well. She can barely function enough to keep a part time job. Her income level is low so she could never pay out of pocket to get diagnosed by Mayo. Her government insurance policy that she pays for doesn't want to approve many tests or specialists. Even when they do, they are mediocre and all they want to do is give her pain meds and anti nausea. She does not take the pain meds and the anti nausea just provides a bit of relief. She needs a diagnosis, not meds that cover up symptoms. What is causing all of this? I wish she could afford to go to Mayo to at least get a diagnosis. She is deteriorating and no one helps her. We do not know what to do. I am her mother and I live in Wisconsin and do what I can to help her keep afloat. At 89 lbs she is frail and dragging herself through her days not living life. I am scared for her. I wish I could find her some help.
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She had blood drawn yesterday to test her levels. We are waiting on the results.
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3 ReactionsMy daughter's hormone levels still remain low. She was told that it can take months for the body to adjust. Recently she found a lump in her neck which is a swollen lymph node. She had an ultrasound on it and it came back abnormal. She is being scheduled for a biopsy on it this week. She has been working with a new general practitioner who has actually been listening to her and seems to want to help her. The first thing they want to do is get the biopsy done and get the results. This is not the first time she has had a swollen gland that stayed that way for a period of time. This seems to be a problem that comes and goes. This is the first time any doctor actually ran any tests because of it. So that is where she is at right now.
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3 Reactions@ghennel Sounds like things are moving forward for your daughter. I hope the biopsy will give you both some answers. Will you keep us up to date?
Her biopsy is this morning. We will have results in 3 days. I will post when we have some answers. Thank you.
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1 ReactionEven though your daughter is experiencing physical symptoms and pain, I really believe she is actually struggling with emotional issues that are manifesting into physical issues. Even though I didn’t have her same symptoms, I struggled unexplained back pain at 30 years old for about 2 grueling years. I saw every pain management doctor you can imagine. I finally went to a holistic healer (whom at first did not seem to help me) but the Chinese doctor had unlocked something inside of me and I understood day by day that my pain was actually psychosomatic. I began to ask myself hard questions and every day I gained a little more clarity. It turns out, I was suppressing so much! Even blocking out emotions completely from the inside. But, my physical body was hurting and I eventually had a breakthrough when I gained awareness of my emotional pain that I had suppressed. I recommend reading the book “Healing Back Pain” by John Sarno. It literally saved my life! The Chinese doctor is a rare disease doctor in San Francisco. I really hope this helps!
Were you able to get a diagnosis for your daughter?
Get your daughter to a teaching / research hospital; if you have already done that and still have had no relief, simply do a search for the best hospitals for this type of problem (Gastroenterology?). A research hospital does not have the insurance limitations a "regular" practice has, at least not in the same way. I imagine that ultimately, you'll have to travel . . . .
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2 ReactionsShe 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!