How to find a doctor that cares and is willing to dig deeper
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!
Hi,
.
Wow. That's a lot to be dealing with! I wish I had some fabulous tips for finding a great doctor, but it seems to be a lot of trial-and-error for far too many people. I know some individuals (though not everyone) has had luck going to large, comprehensive clinics like Mayo or the Cleveland Clinic, but I am well aware that that is not a possibility for many people. I know it's not a possibility for me.
And, boy, I don't blame your daughter for being at the end of her rope with having her very real medical concerns disregarded so callously. If I could wave a magic wand, I would wish that all illnesses and diseases were gone, but if I weren't allowed to have that wish, my next wish would be for every person to have access to quality, compassionate, affordable healthcare. I really don't think that's a big ask.
At the risk of asking questions you have maybe answered a million times, have her doctors ruled out gastrointestinal issues like IBS and Crohn's? Also, has your sone been screened for the rare condition Ehler's Danlos Syndrome? You can read a bit about EDS here -- https://www.ehlers-danlos.com/what-is-eds/. Please know I am in no way trying to offer diagnoses for your children, but some of their symptoms did make me think of certain conditions that get mentioned in this community.
I want to share this article on finding the right doctor -- https://raredisease.net/living/tips-for-finding-a-doctor. Hopefully, it has some tips that you can share with your daughter. I know it shouldn't be this hard to get quality healthcare, but I hope you and your daughter's perseverance pays off.
Best, Erin, Team Member.
