OpenHealth Q&A

Managing Complicated Health Symptoms: Preparation for a Rheumatology Appointment

Hello! Throughout my life, I have faced numerous perplexing and severe health challenges, yet no healthcare professional has been able to determine a specific condition to address. Recently, I received a referral to a local rheumatologist, a nurse practitioner reputed for her ability to identify rare and unusual diagnoses. Before this appointment, I thought it might be useful to gather perspectives from other health providers so I can better advocate for myself. Given my background in healthcare, I often approach my health insights with an informed mindset. ### My Symptoms and Their Onset 1. Inappropriate sinus tachycardia 2. Gastroparesis 3. Erosive gastroesophageal reflux disease (GERD) 4. Recurrent kidney stones 5. Frequent urinary tract infections (not linked to hygiene) 6. Hematuria and white blood cells present, with and without accompanying kidney stones or infections 7. Depression and anxiety issues 8. Tonsil stones 9. An abnormal quantity of what was classified as phleboliths in my abdomen based on a CT scan without contrast 10. Frequent joint dislocations, including a dislocated kneecap that resulted in a medial patellofemoral ligament reconstruction 11. Grade 1 anterolisthesis of C2 on C3, presumably of a degenerative nature 12. Intermittent lazy eye 13. Chronic constipation 14. Nausea 15. Tremors 16. Numbness in both hands—specifically in the pinky and ring fingers extending to the elbow—mostly upon waking 17. Orthostatic hypertension 18. Episodes of vertigo 19. Lightheadedness 20. Brain fog 21. Ongoing fatigue 22. Recurring eye rash and perioral dermatitis 23. Chronic reactivation of Epstein-Barr virus, occurring at least annually since 2016 24. “Reactive” lymph nodes; my right submandibular node can swell to the size of a large grape for no apparent reason, which ultimately led to this rheumatology referral. Among these issues, the most distressing symptoms are constant fatigue, pain, and general lightheadedness. I had not fully grasped the level of daily discomfort I was experiencing until I was at work and began to feel worse than usual, coinciding with the passing of kidney stones (4mm and 2mm), acute hydronephrosis, and a severe urinary tract infection. My urgency to visit urgent care arose when I noticed dark red blood in my urine. My primary care physician considered the possibilities of lupus or Ehlers-Danlos syndrome but did not conduct definitive tests for either condition. In 2018, I tested positive for an antinuclear antibody (ANA). Recent lab results indicate: - TSH levels are normal - Prolactin levels are normal - Most common laboratory assessments (CBC, CMP, ESR, CRP, ANA, etc.) returned normal results, except for a notably low ferritin level of 3.5 and an AST consistently at 12. With this list of symptoms and medical history, I look forward to my consultation with the rheumatologist, hoping for new insights and potential paths for treatment.

Answers (1)

7/9/2025, 2:01:51 AM

OpenHealth AI

Thank you for sharing your detailed health history and current concerns. Preparing for your rheumatology appointment is an important step in advocating for your health, especially given the complexity of your symptoms. Here’s how to approach this consultation effectively.

Key Points to Consider

1. Multifaceted Symptoms: You have a range of symptoms that could relate to autoimmune conditions or connective tissue disorders. This requires systematic evaluation.
2. Previous Tests & Results: Understanding and discussing your earlier lab results (such as the positive ANA and low ferritin) will be crucial.
3. Prioritizing Symptoms: Identifying which symptoms impact your quality of life most will help guide the discussion with the rheumatologist.

Explanation

Your symptoms, including chronic fatigue, pain, frequent dislocations, and abnormal lab results like a positive ANA, suggest that it is prudent to explore possible autoimmune conditions. The rheumatologist will likely focus on conditions such as lupus, Ehlers-Danlos syndrome, or other connective tissue disorders.

Next Steps for Your Appointment

1. Symptom Diary: Keep a diary listing your symptoms (including severity and frequency) leading up to your appointment. This can help provide the rheumatologist with a clearer picture of your health fluctuations.

2. Prioritize Your Concerns: Make a brief list of the symptoms that most disrupt your daily life, such as fatigue and lightheadedness. This will help you convey your most pressing issues.

3. List Previous Investigations: Prepare a summary of previous tests and findings, including laboratory results and any medications you've tried. Be ready to discuss the context of these results with the rheumatologist.

4. Questions for the Rheumatologist:

   • What tests will you perform to explore possible autoimmune conditions?
   • Could my symptoms overlap into multiple diagnoses? How will you approach diagnosis?
   • What treatment options might be available for management of my symptoms?

5. Bring Support: Consider bringing a family member or friend for support during the appointment—having someone else present can help you process the information and remember details discussed.

6. Be Open About Your Mental Health: Don’t hesitate to share your experiences with depression and anxiety, as these can influence your physical health and may be relevant to your overall diagnosis and treatment options.

Reassurance

It’s understandable to feel anxious about your upcoming appointment, especially given your complex history. Remember, you are taking an important step toward finding answers and support for your health. Your proactive approach and thorough preparation will significantly benefit the consultation process.

Feel free to reach out if you have more questions or need further assistance.