OpenHealth Q&A

Navigating Undiagnosed Symptoms: Seeking Guidance on Next Steps

**Greetings to all,** I have been enduring a set of perplexing symptoms for nearly seven years, which have significantly disrupted my everyday life. Despite consulting with various specialists and undergoing a multitude of tests, I remain without a definitive diagnosis. Many healthcare providers have expressed their inability to assist further, opting instead to redirect me to other experts, suggesting that my situation is particularly challenging. I am reaching out to this community for recommendations—what additional diagnostic avenues should I explore? Below, I detail my symptoms and the diagnostic tests administered thus far. I am a 24-year-old male residing in Poland, seeking expert advice concerning a complicated and unresolved case marked by chronic pain and functional difficulties following spinal surgery. Despite thorough diagnostic assessments and input from multiple disciplines, there remains a lack of understanding and adequate management of my condition. I am looking for suggestions on possible pathways for further diagnosis and treatment options. **Health Background • • • •** - **2017:** First instances of lower back pain radiating into the right leg. - **2018–2022:** Gradual worsening of symptoms resulted in a complete halt to all physical activities. - **July 15, 2022:** I underwent a decompression procedure at the L5/S1 level, which included both laminectomy and foraminotomy (using the Rivo Spine system). My recovery yielded no immediate improvements. Two months later, I began experiencing lingering, burning pain down the entire right leg, discomfort in the sacroiliac joint, and intermittent intercostal pain. Since then, I have struggled to sit normally, leading to considerable functional limitations. **Current Symptoms • • • • •** - Intense burning pain affecting the entire right lower limb (including the thigh, calf, and foot). - Discomfort in the right sacroiliac joint that worsens with movement. - Intermittent sharp intercostal pain that can last from minutes to hours. - Symptoms get worse with sitting, physical exertion, or activities that predominantly use one side. - Though there are no clear motor deficits, I experience significant fatigue during exertion. **Imaging Results (By Date) • • • •** - **MRI of Lumbar Spine (2020–2024):** Persistent L5/S1 disc protrusions (maximum size of 4.5 mm), disc dehydration, and mild contact with the S1 nerve root; however, no significant compression was noted. Post-surgical changes observed. - **MRI of SI Joints (June 2024):** Evidence of bone marrow edema in the right sacroiliac joint, indicative of active sacroiliitis. - **CT of Pelvis (August 2024):** Presence of nonspecific sclerotic lesions in both the pelvis and femur, further imaging recommended. Whole-body scintigraphy (November 2024) revealed no pathological radiotracer uptake and ruled out malignancy. **Further Diagnostic Tests • •** - **EMG (April 2023):** Results were normal, indicating no signs of radiculopathy or peripheral nerve issues. - Various tests including Doppler ultrasound and ERP testing returned normal results. - Laboratory tests (2021–2024): Repeated normal findings in CBC, ESR, and CRP. - **HLA-B27 testing:** Returned negative. **Consultations and Opinions from Specialists • • • •** - **Rheumatologist (2024):** Suggested a diagnosis of axial spondyloarthritis (according to ASAS criteria) based on MRI findings and reported symptoms. However, the HLA-B27 was negative, and radiographs of the sacroiliac joints showed no abnormalities. - **Immunologist:** Found no immune or inflammatory issues (ANA, protein levels, CK). - **Neurologist:** Considered neurological involvement. Treatment with Tolperisone, Ipidacrine, and Apicam offered temporary relief, but symptoms ultimately returned, and care was discontinued. - **Orthopedic and Neurosurgical evaluations:** Concluded no need for revision surgery and could not identify a mechanical cause. **Treatment Tried So Far • • • •** - **Medications:** Including Pregabalin, Duloxetine, Lidocaine patches, Depo-Medrol, Ipidacrine, and Tolperisone, all of which provided limited or fleeting relief. - **Physical Therapy:** Approaches like the Cyriax technique, TECAR therapy, along with manual and core stability exercises yielded no sustained results. I have not undergone any interventional pain management procedures such as nerve blocks or ablations. **Seeking Assistance** Having exhausted the local specialist avenues, I would greatly appreciate any leads on reputable clinics, specific practitioners, or potential diagnostic routes. My condition has resulted in substantial impairment and has led to a significant depressive episode necessitating medication. I am ready to share all pertinent medical records and imaging if required. Thank you for considering my request; any assistance you can provide would be immensely valued.

Answers (1)

6/22/2025, 8:30:59 PM

OpenHealth AI

I'm sorry to hear about the challenges you've been facing with your symptoms and the complexities involved in your case. It’s understandable to feel frustrated when you have been through multiple evaluations and treatments without getting the relief or answers you need. Let's focus on potential next steps you could consider for further assessment and management of your condition.

Main Points:

1. Explore Possible Avenues for Diagnosis: There may be additional tests or referrals to specific specialists that could provide further insights into your symptoms.
2. Consider Pain Management Options: Investigating interventional pain management techniques might be beneficial.
3. Prioritize Mental Health Support: The emotional impact of chronic pain is significant; ensure you have the necessary mental health support.

Explanation:

Your symptoms and medical history indicate a complex situation, particularly following your spinal surgery. The presence of bone marrow edema in the sacroiliac joint and ongoing leg pain could suggest inflammatory issues, even if typical markers (like HLA-B27) are negative. Given the challenges you've experienced with conventional treatments, it might be important to revisit certain diagnoses or explore even less common conditions.

Suggested Next Steps:

1. Revisit Diagnoses:

   • Get a Second Opinion: Consider seeking a consultation with a tertiary care center where specialists frequently handle complex cases. They might have access to advanced diagnostic technologies or therapeutic options.
   • Investigate Other Inflammatory Conditions: Connect with a rheumatologist experienced in cases with negative HLA-B27 tests who can look for other markers of inflammatory conditions such as axial spondyloarthritis or other types of inflammatory arthritis.

2. Consider Interventional Pain Management:

   • Consult a Pain Management Specialist: Interventional options, such as epidural steroid injections, radiofrequency ablation, or spinal cord stimulation, might offer substantial relief from chronic pain symptoms.

3. Explore Comprehensive Rehabilitation Programs:

   • Look for integrated rehabilitation programs that focus on pain management alongside physical therapy. These programs might incorporate a multidisciplinary approach, including physical, psychological, and occupational therapy.

4. Maintain Emotional and Mental Health:

   • Lastly, discussing your mental health symptoms with a mental health provider is essential. Chronic pain can take a significant toll on your mood and mental well-being. Support from a therapist can provide strategies to cope with these challenges.

5. Stay Informed and Open to New Findings:

   • Stay updated with medical literature or groups that focus on your specific symptoms, as sometimes emerging treatments or diagnostic tools are reported outside standard medical practices.

Your journey is understandably difficult, but there's hope in pursuing further diagnostics and comprehensive care pathways. Please feel free to share updates or any specific areas where you need more guidance.