Hi RD friends! My daughter has some type of sero-negative auto-immune condition, and has had it since she was 12 (she's 32 now). She had blood work that changes, but did have several speckled ANA tests in the past. The number of tests that she's had is beyond belief. Things will be off this time, not the next, some that are barely within or above "normal" ranges for extended periods of time, and others that are way off, but don't make sense to the doctors. In the meantime, she's got unexplained inflammation all over her body and too many other issues to go into. She does have DOCUMENTED severe Reynaud's. For the past 8 months (actually 14 years), she's been dealing with stomach inflammation (documented through endoscopy -gastric epithelial dysplasia) that has worsened over time, and is really causing her a lot of discomfort. After a recent abnormal endoscopy, her doctor didn't have an answer as to what was causing it, and told her that if it was still bothering her in 4 months, to come back. She's at the end of her rope. She's depressed and done and told me that she wished that doctors would spend the day in her skin so that they could feel what she feels.
How did you guys find a doctor that will look at the entire person, actually listen, and do some investigations about what this is so she can get treatment? Oh, and I believe that my son (her brother) has some form collagen syndrome as the skin on his face and neck can be stretched over an inch and a half, has joint problems, and vascular issues. She also has a great aunt that died in her 40's from MS too.
Thanks!