Help finding the right specialists/next steps to take?
Mystery Illness help??
Hi guys. I might be using the wrong tag, so I apologize in advance. But this post is going to be about my best friend and yes I have her permission to share.
She’s always been a relatively healthy individual, minus some inherited cholesterol issues. But a few months ago she was hit with a tsunami of bizarre and miserable health issues:
- A large lump formed in her armpit and was surgically removed. At first she was told it was a staph infection but then she was later told by a second surgeon that it was infected breast tissue. That surgeon referred her to a breast specialist who refused to see her.
- she’s had a chronic, idiopathic dry cough that can’t be eliminated through allergy meds (both OTC and prescription), acid reflux medication, or most cough medications. Codeine does give her a modicum of relief but she’s a completely sober person and does not want to become dependent on anything, let alone take anything that alters her mental state.
- her thyroid peroxidase antibody came back at 809, which is supposed to be under 100.
- her ANA blood work came back at 640, test results saying it’s indicative of Sjogren’s, mixed connective tissue diseases, or scleroderma. No follow up ENA was ever ordered.
- she’s been experiencing weight gain, overall weakness, profuse sweating, shakes, IBS, worsened anxiety, and tachycardia.
- she also has PCOS
She’s been seeking answers since June but has really just been bounced from one doctor to another with no real answers or leads. Today she saw an endocrinologist who completely dismissed her concerns, her labs, and even the suspected diagnoses from her previous specialists. She’s feeling incredibly defeated and I thought I’d start digging around a little more on her behalf. I will preface and say that she’s yet to be referred to a rheumatologist despite her labs heavily suggesting she needs one. The endocrinologist she saw today said he refused to send her because he didn’t think she needed one.
I’m not looking for medical advice here but possibly some suggestions on where she can start and how I can help better advocate for her. Or even if anyone has had similar experiences/symptoms? She lives in a different state so while I can’t physically be at her appointments, I can hopefully provide her with better tools that help her be heard by her doctors. I worry that she’s facing medical sexism and that whatever is going on with her may reach a very dangerous stage before she’s taken seriously.
Posted Sep 3, 2025, 6:29 PM UTC