Persistent Health Struggles: Seeking Insights on Undiagnosed Conditions
**Title: Female in Her 30s Facing Chronic Low-Grade and Exertion-Induced High Fevers, Positive ANA, Neurological and Gastrointestinal Symptoms – Is It an Autoimmune Disorder or Dysautonomia?** I am reaching out after feeling unheard by multiple healthcare professionals, hoping to find someone who will consider my situation and perhaps offer insights. I welcome any feedback, even if it means telling me I might be overreacting. ### Profile: - **Gender:** Female - **Age:** Early 30s - **Duration of Illness:** Several years with a gradual worsening of symptoms ### Key Symptoms (Chronic and/or Exacerbated): - Consistent low-grade fever (between 37.5–38.5°C) occurring nearly every day, which surges above 39°C with moderate exertion (for instance, a mere 10 minutes of standing increases my temperature by 0.7°C). - Unrelenting fatigue and a profound sense of malaise following exertion. - Chronic headaches and migraines since my childhood years. - Notable inward turning of my right eye, likely a neurological issue, according to an ophthalmologist. - Cognitive difficulties manifest as brain fog and significant memory problems. - Sensations of numbness and tingling along with weakness in my left arm, coupled with overall muscle weakness. - Scalp lesions lasting over six months, resistant to dermatological treatments, and not consistent with psoriasis. - Ongoing pain in joints and muscles, particularly in the lower back. - Possible hypermobility, raising suspicion for conditions like Ehlers-Danlos Syndrome (EDS), with a Beighton score exceeding 4 (currently awaiting further evaluation). - Gastrointestinal complaints include frequent nausea and episodes of diarrhea lasting weeks, with glucose level fluctuations. - Instances of tachycardia and breathlessness, especially during flare-ups. - Development of a facial rash triggered by sun exposure or physical exertion. - Diagnosed with hidradenitis suppurativa, with tendencies for excessive sweating. ### Previous Investigations: - **MRI of the Brain and Spine:** Conducted multiple times; no significant abnormalities identified. - **Rheumatologist Consultations:** Every three months for over three years without a definitive diagnosis, as symptoms have been deemed "not severe enough for treatment." - **Nephrologist Evaluation:** Rule out chronic kidney disease and no evidence of nephritis detected. - **Neurologist Opinion:** Symptoms attributed to stress with no substantial findings reported. - **Dermatologist Assessment:** Psoriasis ruled out despite a strong family history. - **Hospital ER Visits:** Several instances with no urgent concerns noted at the time of discharge. ### Laboratory Findings (Spanning Several Years): - **Autoantibody Tests:** Positive ANA, yet all specific ENA tests (anti-Smith, SSA, SSB, anti-dsDNA, etc.) returned negative. - Positive results for MPO-ANCA in the past, but currently within the normal range. - CRP and ESR levels chronically mildly elevated. - Fluctuations in white blood cell and platelet counts frequently above normal ranges. - Ferritin and vitamin D levels slightly below normal values. - Slightly elevated C3 and normal C4 levels noted. - Occasional increases in alpha-1 and alpha-2 globulins; slight decrease in albumin concentrations. - Positive for HLA-B27, with a family history of psoriasis and arthritis. - Fasting glucose within upper normal limits, and normal HbA1c levels, although there is a family inclination toward type 1 diabetes. ### Additional Considerations: - A previous case of appendicitis went undiagnosed for three years, only confirmed through laparoscopy, revealing that gut tissue had fused with the abdominal wall. - Throughout my journey, I meticulously recorded symptoms and flare patterns and presented photographic documentation of skin conditions during medical appointments. - I have consistently encountered dismissive attitudes from physicians who attribute my symptoms to stress or anxiety, despite ongoing test results and a decrease in my functioning abilities. It is worth mentioning that I am on the autism spectrum. ### Questions I Have: - Is it plausible that I am experiencing a seronegative autoimmune disorder (such as lupus, Sjögren’s, ankylosing spondylitis, or microscopic polyangiitis) or dysautonomia (including POTS, ME, or CFS)? - Could this indicate a rare overlap syndrome or an early-stage condition that does not yet fulfill diagnostic criteria? - What appears to be the most probable cause for these symptoms? I have a sense that I may be exhibiting signs of various autoimmune disorders—do any patterns emerge? Please excuse any language errors; English is not my first language. If you require more information, please do not hesitate to ask, and I'll do my best to provide necessary details. Thank you for taking the time to read this and for any assistance you might offer.
Answers (1)
8/7/2025, 12:11:10 PM
OpenHealth AI
Thank you for sharing your detailed medical history and symptoms. I understand how challenging it must be to face persistent health struggles with a lack of clarity in diagnosis. Your situation presents a complex picture, and while I can’t provide a definitive diagnosis, I can help you explore potential avenues and actionable steps to consider.
Key Points:
- You may be experiencing symptoms consistent with an autoimmune disorder or dysautonomia.
- It's possible to have a seronegative autoimmune condition that does not meet standard diagnostic criteria yet.
- Your symptoms warrant further evaluation and support.
Explanation:
The symptoms you've described—chronic low-grade fevers, neurological issues, gastrointestinal complaints, and fatigue—suggest a potential autoimmune condition or dysautonomia. Autoimmune disorders like lupus and Sjögren’s can sometimes present with non-specific symptoms and positive ANA tests without meeting full diagnostic criteria. This is also true for dysautonomia conditions like Postural Orthostatic Tachycardia Syndrome (POTS) or Chronic Fatigue Syndrome (CFS).
Your positive autoantibody tests (like ANA and HLA-B27) and fluctuating inflammatory markers may indicate an underlying autoimmune process. The presence of neurological symptoms and gastrointestinal issues adds to the complexity, as these can overlap with various conditions, including EDS or even a rare overlap syndrome.
Next Steps:
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Symptom Tracking: Continue to maintain your detailed symptom diary, noting any patterns related to activity level, diet, stress, and environmental triggers. This information can be invaluable for consultations with specialists.
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Comprehensive Specialist Review: Consider seeking a second opinion from a specialist in autoimmune diseases or a multidisciplinary clinic that focuses on complex chronic conditions. Ensure that they have experience with seronegative autoimmune disorders.
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Explore Dysautonomia Evaluation: Based on your symptoms, a tilt table test or active stand test may be warranted to evaluate for conditions like POTS. Tracking your heart rate, blood pressure, and general response to positional changes can provide insights.
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Update Laboratory Testing: Discuss with your healthcare provider the possibility of targeted tests that may not have been explored yet, including inflammatory markers, more specific autoantibodies, and functional tests for conditions like mast cell activation syndrome.
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Support Networks: Consider connecting with patient advocacy groups for autoimmune disorders or dysautonomia. They often provide resources and support from others with similar experiences, which can be empowering.
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Self-Care Strategies: Focus on managing fatigue and discomfort:
- Rest and Pacing: Balance activity with adequate rest to manage fatigue.
- Hydration and Nutrition: Maintain hydration, especially if you experience gastrointestinal symptoms. Aim for a balanced diet tailored to your body’s needs.
- Mindfulness Techniques: Explore stress-reduction techniques, such as meditation, yoga, or gentle exercise, which might help improve overall well-being.
Conclusion:
While the journey to understanding your health can be frustrating, I assure you that your symptoms are valid, and seeking comprehensive care is crucial. By actively tracking your symptoms and engaging with knowledgeable healthcare professionals, you can work towards clearer answers and effective management of your condition. If you need help with specific terms or further details on any condition, feel free to ask.
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