OpenHealth Q&A

Seeking Insights on My Complex Health Condition

Hello Healthcare Professionals, I am a 25-year-old woman, standing at 5 feet 6 inches and weighing 150 pounds. I have a medical background that includes congenital deafness on the right side, the cause of which remains undetermined, along with a diagnosis of major depressive disorder (MDD). Since the spring of 2024, I have been experiencing a decline in my health, culminating in significant hearing loss and hindering my ability to work. Despite undergoing thorough examinations, my healthcare providers are baffled by the underlying issues causing my condition. ### Current Health Challenges: 1. **Left-Sided Hearing Loss**: I am experiencing severe sensorineural hearing loss, which began with episodic drops that responded initially to prednisone. However, it has progressed to a point where it no longer responds to treatment and is likely to continue deteriorating. 2. **Persistent Tinnitus**: I have chronic tinnitus that is constant. 3. **Trigeminal Neuralgia**: The left side of my face is increasingly affected by trigeminal neuralgia, with more frequent episodes occurring. 4. **Chronic Headaches**: I suffer from ongoing pressure headaches that intensify with changes in head position or heat, generating a sensation of pressure in my ears and at the base of my neck, as well as across my forehead. 5. **Ocular Migraines**: I experience frequent left-sided ocular migraines, which have significantly worsened while on hydroxychloroquine. 6. **Tensor Tympani Spasms**: These spasms occur intermittently in my left ear. 7. **Joint Pain**: I have severe bilateral joint pain that is sharp and burning, often affecting my ability to move, yet there is no noticeable swelling. 8. **Skin Conditions**: In the last six months, I have developed rosacea and eczema, along with inflammation episodes involving an old tattoo and pre-existing moles. 9. **Fatigue and Heat Intolerance**: Consistent fatigue and intolerance to heat, accompanied by night sweats. 10. **Menstrual Irregularities**: I am dealing with prolonged menstrual cycles despite using hormonal birth control methods. 11. **Gum Issues**: There are intermittent gum inflammations present, despite having no evidence of dental disease. 12. **Nerve Pain**: For over four years, I have been coping with chronic pain affecting both the radial and ulnar nerves. 13. **Eye Floaters**: I've noticed an increase in eye floaters, especially in my left eye. ### Imaging Results: 1. **Brain MRIs**: I underwent three MRIs of the brain, including both internal auditory canal and trigeminal protocols, all of which appeared normal, although one indicated transient white matter hyperintensities. 2. **Various CT Scans**: A brain CTA, abdominal CT, renal ultrasound, and pelvic ultrasound returned normal findings, aside from the discovery of a small gallstone. 3. **EEG and EMG**: Both tests came back normal. ### Laboratory Findings: 1. My IgA levels have been chronically elevated (around 400), while alkaline phosphatase has been persistently low (~26) for the past four years. My cortisol levels are high, and I have a history of low vitamin D. 2. **ANA Test**: My ANA was positive (1:40, escalating to 1:80 in 2024 with a speckled pattern), but it returned negative on two occasions in 2025 after six months of hydroxychloroquine treatment. 3. **ENA Test**: Results were negative. 4. I experienced a temporary spike in C3 and C4 levels possibly linked to a flare-up or acute illness, which normalized after starting hydroxychloroquine. 5. **CRP and ESR**: Both markers were elevated initially but returned to normal after treatment. 6. Following the cessation of steroids, my hormonal labs mostly returned to normal, though renal tests were adversely impacted, and I felt quite unwell during my last high-dose prednisone cycle. 7. A rash biopsy from my arm confirmed atopic dermatitis, while tests for lupus antibodies returned negative on both blind biopsy from my back and facial rash, which was not biopsied. ### Treatment History: - Hydroxychloroquine provided relief from joint pain and fatigue but resulted in debilitating migraines, leading to its discontinuation three weeks ago. While my migraines have improved since stopping the medication, my other symptoms have severely exacerbated again. No alternative medications have offered relief; in fact, sumatriptan exacerbated my situation. I have since ceased all medications and supplements except for Desvenlafaxine (my antidepressant) and Nortrell (birth control). As of now, I am mostly deaf and managing debilitating daily symptoms. My specialist team, including neurologists, rheumatologists, ENT professionals, endocrinologists, and my primary care physician, are at a loss regarding the next steps. I currently lack an official diagnosis other than eczema. I would greatly appreciate any insights, theories, or suggestions on further evaluations that could help. Thank you!

Answers (1)

6/16/2025, 6:41:15 PM

OpenHealth AI

Thank you for sharing such detailed information about your complex health condition. I can see how overwhelming this must be for you, and I'm here to help you navigate your concerns with empathy and actionable insights.

Key Points:

1. Your symptoms suggest a potential autoimmune or systemic condition that is still under investigation.
2. Managing symptoms while seeking further evaluation and potential diagnosis is crucial.
3. Keeping a symptom diary and considering lifestyle modifications may provide some relief.

Explanation:

Your combination of symptoms, including hearing loss, facial pain, joint pain, skin issues, and migraines, indicates that there may be an underlying condition that is affecting multiple systems in your body. The elevated IgA levels and positive ANA suggest that an autoimmune disorder is a possibility, even if a definitive diagnosis has not yet been made.

Given the complexity of your case and the involvement of multiple specialists, it’s understandable to feel frustrated. The interaction between your symptoms might point to a connective tissue disease or an inflammatory process that has yet to be fully identified.

Actionable Next Steps:

1. Symptom Diary: Start a symptom diary to track daily symptoms, triggers (such as heat, stress, diet, etc.), and any changes after stopping medications. This can provide valuable insights both for you and the healthcare team.

2. Consult for Autoimmune Testing: Discuss with your healthcare team the possibility of further autoimmune testing or re-evaluating past tests. Certain conditions may not be easily identified with standard tests. Tests such as antiphospholipid antibodies, further ENA testing, or seeking a second opinion from a specialist in autoimmune diseases may be beneficial.

3. Lifestyle Modifications: Consider reviewing aspects of your daily routine that may affect your symptoms:

   • Diet: A balanced diet rich in anti-inflammatory foods (like fruits, vegetables, lean proteins, and omega-3 fatty acids) could help combat inflammation.
   • Stress Management: Engage in stress-reducing practices such as mindfulness, yoga, or gentle stretches which might help with facial pain and headaches.
   • Adequate Hydration: Staying well-hydrated may alleviate some fatigue and headache symptoms.

4. Pain Management Strategies: Discuss alternative pain management strategies for trigeminal neuralgia and chronic headaches. Physical therapy, acupuncture, or other non-pharmacological methods may provide relief without exacerbating migraines.

5. Regular Follow-Ups: Ensure regular follow-ups with your specialists to keep track of any new symptoms or changes. Keeping your medical team informed can help them identify patterns or indicators that require more focused investigation.

6. Support Systems: Engage with support groups or mental health resources for dealing with chronic illness. This can provide social support and coping strategies.

Remember, while it may seem daunting, you are not alone in this process. It is essential to continue advocating for your health, seeking answers, and trying strategies that may help alleviate your symptoms. If you need further clarification or support on any specific area, please let me know!