I am a medical mystery

Posted by jadeer @jadeer, Nov 18 1:15pm

I am 17 years old and I have chronic widespread pain in my bones, joints, muscles, and skin. I have fluctuating blood oxygen (60-99) and I have shortness of breath, heart palpations, heart racing, dizziness, nausea, severe brain fog, extreme fatigue and I get pale and purple whenever it dips. It rarely stays down for more than 4 minutes at a time but it happens more often than I think it should. My primary care doc put me on beta blockers to hopefully widen my veins to help with my oxygen levels but it has yet to help at all. I check to make sure my oximeter is working correctly and that it's not just a user error. My ana test came back really high for the second year in a row. I visited a rheumatologist and they just sent me away after only doing a sed rate test. I have POTS as well but that doesn't cause low blood oxygen. If anyone can help that would be greatly appreciated because I can barely get through my day.

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jocksonmasley | @jocksonmasley | Dec 10 8:37am

It sounds like you are dealing with a challenging and complex set of symptoms, and finding the right support can feel overwhelming. While I’m not a medical professional, there are some steps you can take to seek better answers and care. Given your high ANA levels, it may be beneficial to consult with another rheumatologist or an immunologist, as these specialists can investigate autoimmune conditions like lupus, mixed connective tissue disease, or others that may explain your symptoms. A pulmonologist could help evaluate your fluctuating oxygen levels and shortness of breath, potentially conducting tests like pulmonary function studies or sleep evaluations to rule out lung-related issues. Since you have POTS and are experiencing heart-related symptoms such as palpitations and a racing heart, a cardiologist familiar with dysautonomia or autonomic disorders might provide valuable insights. Additionally, the severe brain fog, dizziness, and fatigue could warrant a visit to a neurologist to investigate conditions like small fiber neuropathy or other nervous system issues.

It might also be worth considering a comprehensive diagnostic approach, including advanced bloodwork (e.g., anti-dsDNA or anti-Smith antibodies) and imaging studies to ensure no conditions are overlooked. Finally, connecting with a multidisciplinary team that communicates with each other—such as through a major medical center—can help streamline your care. Don’t hesitate to advocate for yourself by seeking second opinions or asking for referrals to specialists who will take a deeper look at your symptoms.