Sick daughter goes undiagnosed

Posted by ghennel @ghennel, Nov 15, 2019

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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Hi @ghennel , You mentioned that your daughter was tested years ago for celiac disease and it was ruled out. In my case I have been tested numerous times over the years, including at Mayo, to continue ruling it out. Maybe it would be something your daughter could be tested for again?
Also/ has she been on food elimination diets?

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She has been on food elimination diets. She has quite a few food allergies and follows a very restricted, limited diet. She was only tested for celiac once. Maybe another test should be done.

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Hello, she has started hormone therapy. As expected it has her emotionally all over the place. She has not gone back in to be retested yet to see if her body is balancing out. She has an appointment in a few weeks. As far as her digestive problems, those have not gotten any better. We still don't know if all the health problems she has are related, or separate things. She has this odd problem where on one side of her body her rib cage swells up and is very tender to the touch. It is substantially larger on the swollen side. She is having a flare up right now. With this she sometimes get swollen lymph nodes, and she has that too this time. She has been seen for this many times in the past and no one has a clue why this happens. It happens often enough that it is obvious something isn't right. All they want to do is give her something for pain and inflammation. That seems to be the answer for most of her unexplained problems. It is very frustrating.

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Has she ever had a breath tests for small intestinal bacterial overgrowth (SIBO)? Also endocrinologist?

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@ghennel

Hello, she has started hormone therapy. As expected it has her emotionally all over the place. She has not gone back in to be retested yet to see if her body is balancing out. She has an appointment in a few weeks. As far as her digestive problems, those have not gotten any better. We still don't know if all the health problems she has are related, or separate things. She has this odd problem where on one side of her body her rib cage swells up and is very tender to the touch. It is substantially larger on the swollen side. She is having a flare up right now. With this she sometimes get swollen lymph nodes, and she has that too this time. She has been seen for this many times in the past and no one has a clue why this happens. It happens often enough that it is obvious something isn't right. All they want to do is give her something for pain and inflammation. That seems to be the answer for most of her unexplained problems. It is very frustrating.

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Good morning, @ghennel . I’m so sorry this situation has not been resolved yet. How frustrating and upsetting for you and your daughter. As it has been a few weeks since she started hormone therapy, has anything changed?

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@gtassithomas

Has she ever had a breath tests for small intestinal bacterial overgrowth (SIBO)? Also endocrinologist?

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She has not had a breath test. She has an appointment set up with an endocrinologist. It is over a month before she can get in for her initial consultation.

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@becsbuddy

Good morning, @ghennel . I’m so sorry this situation has not been resolved yet. How frustrating and upsetting for you and your daughter. As it has been a few weeks since she started hormone therapy, has anything changed?

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She had blood drawn yesterday to test her levels. We are waiting on the results.

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My 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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@ghennel

My 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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@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?

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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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