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:
-
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.
-
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.
-
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.
-
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.
-
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.
-
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.
Related Questions
Seeking Guidance on Persistent Chest Discomfort After Extensive Testing
I'm a 43-year-old male, standing at 5'11" and weighing 180 pounds. My journey began around March to April of 2025 when, despite regularly hitting the gym four times a week, I was struck by severe chest pain along with frequent belching and a tight feeling in my diaphragm. At times, the pain became so intense that I feared it might be a heart attack. **Medical History:** In May 2019, I received a diagnosis of **PVS** and have since been under the care of a cardiac electrophysiologist. Upon experiencing these new symptoms, I consulted my EP, who conducted an EKG right then and set me up with a 7-day heart monitor. The results showed no irregularities. Subsequently, I was directed to a cardiologist, who carried out both a **stress test** and an **echocardiogram**, both of which yielded normal findings. Afterward, I returned to my primary care physician, who speculated that my gallbladder might be involved. An **ultrasound** was performed but revealed no issues. I then requested a **chest X-ray**, which also came back normal. My PCP then considered the possibility of a **hiatal hernia** and referred me to a gastroenterologist; unfortunately, that appointment took almost **five months** to materialize. In the meantime, my symptoms persisted, prompting me to cease weightlifting and switch my focus to **cardio and running**. Surprisingly, these activities didn’t exacerbate my symptoms, though the chest pain remained constant. When I finally saw the gastroenterologist, they suggested an **upper endoscopy**, which took another roughly three months to arrange. During this procedure, I was diagnosed with **Eosinophilic Esophagitis (EOE)**, a condition I had not previously experienced. The doctors also placed a pH monitoring device for acid reflux assessment, which indicated **no unusual acid exposure**. Following this, I began a treatment plan that included a swallowed steroid inhaler and an increased dosage of **omeprazole**. Sixty days later, I underwent another endoscopy, which showed that the EOE had largely resolved, with minimal residual symptoms. Unfortunately, my chest discomfort persisted without any improvement. It has now been about **a year** since these issues emerged, and I still have not found substantial relief. A recent chest MRI completed at a dedicated imaging center revealed no abnormalities. I entertained the idea of **costochondritis**, but again, the MRI did not support that hypothesis. The only minor relief I find comes from consciously pulling my shoulders back and expanding my chest. I continue to experience discomfort around my **diaphragm** and tenderness in the area of the **xiphoid process**. My PCP prescribed a steroid pack, which was somewhat beneficial for the pain but failed to alleviate the pressure or constant discomfort. At this juncture, I feel quite lost and uncertain about my next steps. I would greatly appreciate any insights or experiences from others who have faced similar issues. Additionally, if there are any physicians here willing to offer advice, I am open to traveling to find the answers or relief I'm desperately seeking.
Concerns After Gallbladder Surgery (Three Weeks Post-Op) - Is It an Infection?
Profile: - Age: 35 - Gender: Female - Height: 5 feet 4 inches - Weight: 160 pounds - Ethnicity: Asian Duration of Symptoms: Last Three Weeks Location: United States Recent Medical History: Nearly three weeks have passed since my gallbladder removal surgery. Over the last few days, I've noticed a small amount of unclear fluid coming from the incision. I just observed what seems to be pus oozing from the surgical site. Although there is slight tenderness when I move or touch the area, it isn't painful. Thankfully, I haven’t experienced any fever or chills, and there’s no unpleasant odor emanating from the wound. Should I continue to clean it with soap and water, or is it necessary for me to visit the emergency room for further evaluation?
Exploring Inositol and CoQ10 for Managing PCOS Symptoms
As a 28-year-old female, I have faced the challenges of polycystic ovary syndrome (PCOS) since my teenage years. Starting from the age of 16, I have dealt with highly irregular menstrual cycles, occurring anywhere from three to eight months apart. My diagnosis has been substantiated through two ultrasounds and blood tests revealing elevated androgen levels. Despite maintaining a healthy diet and leading an active lifestyle—balancing my work as an environmental biologist with gym sessions alongside my husband—I continue to wrestle with weight management. Other symptoms impacting my daily life include significant hair loss, unwanted facial hair, and persistent fatigue. In my journey to manage PCOS, I previously sought counsel from a gynaecologist, who primarily suggested hormonal birth control as the main approach to alleviate my symptoms. Although I adhered to this recommendation for several years, the hormonal changes negatively impacted my mood, leading me to discontinue its use. Another alternative proposed by my gynaecologist involved androgen blockers, but these are not suitable for me since my husband and I plan to start a family in the next two to three years. Recently, my research led me to discover that supplements like Inositol and CoQ10 might effectively combat insulin resistance and lower androgen levels. They are purported to improve various symptoms associated with PCOS, including the regulation of ovulation, all while boasting minimal adverse effects. I am curious about the viability of these supplements as alternatives to hormonal birth control or androgen blockers in managing my PCOS symptoms.
Seeking Clarity on My Spinal Tap Results: A Bit Anxious
I am a 31-year-old woman experiencing a continuous headache for the past four months, accompanied by feelings of nausea and exhaustion. I take Lexapro each day to manage my mental health. I have a history of migraines and headaches, but this recent episode doesn't align with my previous experiences. Here are the findings from my spinal tap: - **Opening Pressure of Cerebrospinal Fluid (CSF)**: 9 cm H₂O - **Presence of Red Blood Cells (RBCs) in CSF**: 2,570 - **Total Protein Level in CSF**: 107 mg/dL - **ACE Level in CSF**: 4.4 - **Other Tests on CSF**: Results were normal. - **Brain MRI and MR Venography**: Both tests yielded normal results. - **Blood Test Results**: Normal results were obtained. Given these results, I'm feeling a bit uneasy and I’m hoping to better understand what they might indicate about my health.
Navigating Ear Infections While Traveling in Thailand
**Age:** 23 **Height:** 6'3" **Weight:** 88 kg **Medication Taken:** 1000mg Bactoclav - Amoxicillin with Potassium Clavulanate, along with pain relief and antihistamines. **Summary:** I’m hesitant to consult a doctor overseas only to receive a prescription for the same antibiotics available at a local pharmacy for a fraction of the price. What strategies can I employ to effectively manage this persistent ear infection? Am I being too hasty in my expectations? I have a long history of ear infections, often triggered by exposure to water or any activity impacting my ears. I regularly use a specialized oil before showering to prevent water from entering my ears. While backpacking in Thailand, I've developed a particularly severe ear infection over the last several days. Initially, a course of 500mg amoxicillin seemed effective, but significantly, just yesterday my condition took a downturn, shifting from nearly healed to painfully inflamed. Now, my ear is not only swollen but also incredibly sore. In an attempt to combat this, I’ve been taking 1000mg Bactoclav - Amoxicillin and Potassium Clavulanate, having consumed seven tablets in the last two days; unfortunately, there's been no noticeable improvement. I’m reluctant to seek medical attention, fearing I would be prescribed the same medication I could acquire from a pharmacy, albeit at a much higher cost. Yet, I’m also starting to question the efficacy of the pharmacy’s medication. I’ve only recently begun the stronger treatment since my symptoms returned. Any advice would be greatly valued! In addition, I’d like to share that just a week into my four-month journey, I feel as though my ongoing ear issues are gradually dominating my life. I am incredibly grateful for this travel opportunity, and while my health isn’t at risk in a serious way, these ear complications are becoming quite overwhelming. Could there be surgical options available? Might there be an underlying health concern that I’m unaware of? It doesn’t seem normal to be plagued by constant ringing, popping sounds, and wax buildup in my ears. Moreover, it feels excessive to have to apply products in my ears every time I shower.