Discussions By Condition: I cannot get a diagnosis.

Multiple conditions - can't get diagnosis

Posted In: I cannot get a diagnosis. 20 Replies
  • Posted By: Voltrael
  • February 5, 2008
  • 06:58 PM

My wife has several conditions which affect her quality of life, make her unable to work, and affects her ability to do what she wants to do as a wife and mother. We believe she may have multiple diseases or conditions, and that they possibly are affecting each other.

Her basic symptoms:

She has pain, mainly in her joints. She started having pain when she was about 10 years old. She is now 29. Unmedicated the pain is great enough to keep her from being able to perform almost any task. The pain is most pronounced in her feet, knees, hips, and hands.

She has had some doctors tell her she had arthritis, osteo and/or rheumatoid. She has had other doctors tell her she doesn't.

She displays many symptoms of lupus. She has flares where her joints become even more painful. She will get a rash on her face. She goes through periods where she loses a significant amount of hair, and her hair grows much slower. She has sun sensitivity. She gets ulcers in her mouth at times. She has constant fatigue, and far less energy than a "normal" person. However, she always tests with a negative ANA, so doctors all rule out lupus.

She gains water weight. In the span of a couple days, she can gain 30 pounds due to retained water. The more active she is, the more water she retains. To lose the water she always needs to take diuretics, and lie down for up to half a day.

She has hidradenitis suppurativa.

She has chronically low potassium and magnesium. This is made worse by using diuretics, but her levels are still clinically very low even when she stays off the diuretics for a while. Her and her mother have both been diagnosed with Gitelman's syndrome.

No matter what medication she might need, she always seems to need a much higher dosage than "normal" for it to be effective. She has trouble digesting food, and will sometimes find whole, undigested pills in her stool.

We currently seem to bounce around, from doctor to doctor, hoping to find someone that can actually help. Her pain issues are the toughest to get anyone to address. She started taking narcotics for pain about 9 years ago, and at this point requires levels that most doctors are not comfortable prescribing.

Any ideas anyone might have on what might be the underlying condition or conditions causing the problem would be appreciated.

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