Seeking Insights on Progressive Hearing Loss and Autoimmune Symptoms
I would like to gather opinions regarding my perplexing medical situation. Greetings Medical Professionals, I am a 25-year-old woman, standing at 5'6" and weighing 150 pounds. I have a history of congenital deafness on my right side of unknown origin, along with major depressive disorder. Since the spring of 2024, I have experienced a significant decline in my health, culminating in profound deafness and an inability to continue working. Despite undergoing thorough diagnostics, my healthcare providers have been unable to determine the underlying cause of my symptoms. ### Current Health Concerns: 1. Severe sensorineural hearing loss in my left ear, starting with occasional drops responsive to prednisone, but now unresponsive to medication and seemingly continuing to deteriorate. 2. Constant tinnitus that persists around the clock. 3. Frequent episodes of trigeminal neuralgia that are becoming more common. 4. Ongoing headaches that feel like pressure build-up, exacerbated by heat or changes in head position; the discomfort emanates from my ears, neck, or forehead. 5. Regular left-sided ocular migraines that have worsened significantly with hydroxychloroquine treatment. 6. Occasional spasms in the tensor tympani muscle of the left ear. 7. Sharp, burning joint pain affecting both sides without swelling, often severe enough to impede my movement. 8. Recently developed rosacea and eczema over the past six months, along with episodes of inflammation in an old tattoo and some moles. 9. Daily fatigue, sensitivity to heat, and night sweats. 10. Irregular and extended menstrual cycles, despite being on hormonal birth control. 11. Intermittent inflammation of the gums, though no dental disease is present. 12. Ongoing bilateral pain in the radial and ulnar nerves for over four years. 13. Increased presence of floaters in my left eye. ### Imaging Results: 1. Three brain MRIs (including protocols for IAC and trigeminal nerve) returned normal results, with one instance showing transient white matter hyperintensities. 2. Multiple CT scans and ultrasounds (brain, abdomen, renal, and pelvic) were mostly normal, revealing only a small gallstone. 3. EEG and EMG tests also came back normal. ### Laboratory Results: 1. Persistently elevated IgA levels (~400) and low alkaline phosphatase across the past four years, with high cortisol levels and chronically low vitamin D. 2. Positive ANA test with a speckled pattern (1:40 to 1:80 in 2024) but negative at two subsequent tests in 2025 after a six-month course of hydroxychloroquine. 3. Negative ENA results. 4. Elevated levels of C3/C4 transiently noted during a potential flare or acute infection; returned to normal while on hydroxychloroquine. 5. Elevated CRP and ESR results, which normalised under hydroxychloroquine. 6. Recent renal lab results were affected during my last high-dose prednisone course but have since normalized along with a standard urinalysis. 7. A skin biopsy from my arm confirmed atopic dermatitis, while biopsies from the back and face showed no lupus antibodies. ### Treatment History: - Hydroxychloroquine provided some relief for joint pain and fatigue but resulted in debilitating migraines, prompting discontinuation three weeks ago. While those migraines have improved, my other symptoms have worsened markedly. - Other medications have been ineffective; sumatriptan exacerbated my issues. As a result, I have ceased taking all meds and supplements except for Desvenlafaxine (an antidepressant) and Nortrell (birth control). Currently, I find myself functionally deaf and facing debilitating symptoms on a daily basis. My doctors, including specialists from neurology, rheumatology, ENT, endocrinology, otology, and my primary care physician, are unclear on how to move forward. My only formal diagnosis at this time is eczema. Any suggestions, theories, or ideas for further evaluation would be greatly appreciated. Thank you for your assistance.
Answers (1)
6/16/2025, 8:40:58 PM
OpenHealth AI
I'm truly sorry to hear about the challenges you're facing with your health. Your situation seems complex, and it can be incredibly frustrating to manage persistent and debilitating symptoms without clear answers. Let’s break down your concerns and focus on what you might do moving forward.
Summary of Main Points
- You are experiencing progressive sensorineural hearing loss, tinnitus, trigeminal neuralgia, and a variety of other symptoms without a clear underlying diagnosis.
- Despite extensive imaging and lab tests, there are no definitive answers to your conditions, leading to ongoing functional impairments.
- You have received treatments like hydroxychloroquine, which had mixed results, leading to further complications.
Explanation
Given the range of symptoms you've reported, including severe hearing loss, neurological issues, autoimmune-like symptoms, and skin concerns, it could suggest a systemic condition. While some lab results hint at autoimmune activity (like elevated ANA and CRP), the absence of a clear autoimmune diagnosis complicates your management. Your symptoms, especially the combination of neurological pain, skin conditions, and the hearing loss, may point to several potential conditions but do not confirm any specific one without further testing.
Next Steps
Here are prioritized actions that may lead to better management of your symptoms:
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Symptom Tracking: Start a detailed symptom diary. Note the frequency, intensity, and triggers of each symptom (e.g., headaches, joint pain, and auditory issues). Share this with your healthcare team to help them identify patterns.
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Consultation with a Multidisciplinary Team: If not already done, seek a comprehensive evaluation from a specialized center, such as those focusing on autoimmune diseases or neurologic disorders. A patient advocate or a checklist of your most pressing concerns may help in these appointments.
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Evaluation for Autoimmune Conditions: Given the elevated IgA levels and the fluctuation in your blood work, it may be worthwhile to explore conditions like Sjögren's syndrome or other autoimmune disorders that can cause synaptic and rheumatic symptoms. Additional tests or consultations with a rheumatologist who specializes in complex cases may be beneficial.
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Lifestyle Adjustments and Self-Care:
- Ensure you maintain a balanced diet rich in anti-inflammatory foods (like fruits, vegetables, whole grains, and healthy fats).
- Consider stress-reduction techniques such as mindfulness or gentle yoga to manage anxiety associated with chronic illnesses.
- Stay hydrated and maintain a regular sleep schedule to improve overall well-being and fatigue management.
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Explore Pain Management Strategies: Since you have experienced trigeminal neuralgia and joint pain, consider working with a pain specialist to assess non-pharmaceutical approaches such as physical therapy, cognitive behavioral therapy (CBT), or acupuncture.
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Regular Follow-Up: Establish a routine of follow-up appointments to reassess your status and adjusted treatments. This will ensure that any new concerns are addressed promptly.
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Support Networks: Look into support groups for individuals dealing with chronic illness. Connecting with others who understand what you’re experiencing can provide emotional support and practical coping strategies.
Please stay informed and engaged with your healthcare providers. It may take time to pinpoint the underlying issue, but proactive steps will help you manage your current symptoms and improve your quality of life. If any specific symptoms worsen, seek immediate medical care. Let me know if you need more information or tailored guidance.
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