Struggling for Answers: Two Years of Illness and Exhaustion
Hello, I’m a 33-year-old woman living in Germany, standing at 164 cm (5’4”) and weighing 125 kg (275 lbs). My lifestyle includes occasional drinking, and I do not smoke. Currently, I am on the following medications: • Zafrilla (Dienogest) prescribed for my endometriosis • Ibuprofen as needed for pain relief. As for my medical history, I have been diagnosed with: • Endometriosis • Insulin resistance • Migraines with aura • Mixed incontinence (both urge and stress). My health challenges began two years ago, and despite consultations with various specialists, including neurologists, endocrinologists, gynecologists, diabetologists, phlebologists, and my general practitioner, the mystery of my condition remains unsolved. Daily, I contend with a number of debilitating symptoms, which include: • Nerve pain affecting my hands, feet, arms, and legs • Issues with vision, such as light sensitivity and flickering at the edges of my sight • Severe migraines accompanied by nausea and vomiting • Tremors and involuntary muscle twitching • Abrupt incontinence episodes • Profound fatigue, often falling asleep effortlessly or struggling to wake up • Frequent infections, including UTIs and respiratory illnesses • Symptoms akin to IBS, like bloating and diarrhea • Constant feelings of cold regardless of the weather • Swollen and painful knees, leading to difficulty bearing weight • Problems with balance, having fallen numerous times • Periods of depression • Burning sensations in my feet • A feeling of heaviness and weakness in my limbs • Heightened sensitivity to light, sound, and odors • Episodes of positional vertigo • Disturbed sleep patterns, where I struggle to either fall asleep or remain asleep. I have undergone several tests, such as: • A normal brain MRI • Visual Evoked Potentials (VEP) showing 99/98 ms, pronounced as “normal” by the neurologist • Somatosensory Evoked Potentials (SEP) scoring 43/43 ms • A nerve conduction velocity test which was deemed “reduced” without any reference ranges provided • Blood tests revealed normal results, with vitamin B12 levels being adequate and no signs of anemia or inflammation. Just today, after only a five-hour outing, I am utterly drained. My legs are painfully burning, nerve pain has flared up, and I find myself dozing off in a chair. This state prevents me from attending to my children properly; even the simplest activities leave me incapacitated. Upon my own research into potential conditions like MS, POTS, ME/CFS, mitochondrial diseases, and various autoimmune disorders, I find that no comprehensive tests have been carried out for these possibilities. My uncertainty is overwhelming, and I am unsure about my next steps. I would greatly appreciate any recommendations for further tests or referrals that I could pursue. Your insights would mean a lot to me. Thank you for taking the time to read my story.
Answers (1)
7/23/2025, 3:40:57 PM
OpenHealth AI
I understand that you’re dealing with a very complex and challenging situation, with a range of debilitating symptoms affecting your daily life. It’s clear that you’re seeking answers and effective management strategies to improve your quality of life. You’re not alone in this, and it’s important to approach your health journey step-by-step.
Summary of Key Points:
- Wide Range of Symptoms: You have multiple troubling symptoms, including fatigue, nerve pain, migraines, balance issues, and incontinence.
- Previous Tests and Consultations: Despite extensive testing, no definitive diagnosis has been provided, leaving you frustrated.
- Potential Conditions of Concern: Your research points towards conditions such as multiple sclerosis (MS), postural orthostatic tachycardia syndrome (POTS), myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and autoimmune disorders.
Explanation:
The symptoms you’re experiencing can be interconnected and may stem from several underlying causes. Chronic fatigue, nerve pain, and issues with balance and incontinence suggest that there might be a neurological component, but it’s also possible to have multifactorial conditions. It's crucial that the next steps you take focus on identifying any missed diagnoses while also working to manage your symptoms more effectively.
Next Steps:
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Follow Up with Specialists:
- Given your symptom profile, consider asking for a referral to a neurologist who specializes in complex cases or an autonomic specialist who can evaluate for conditions like POTS or dysautonomia.
- A rheumatologist may also be beneficial, especially to explore possible autoimmune disorders.
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Comprehensive Testing:
- Request tests for conditions like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and autoimmune disorders. This may include blood tests for inflammatory markers, autoimmune panels, and specific tests such as an MRI of the cervical spine or lumbar puncture if indicated.
- Consider a tilt table test to assess for POTS or dysautonomia, which can explain fatigue and balance issues.
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Symptom Management:
- While awaiting further evaluations, focus on managing your symptoms:
- Energy Conservation: Prioritize activities, use rest periods, and engage in gentle, restorative exercises like stretching or yoga to manage fatigue and maintain mobility.
- Pain Management: Continue using ibuprofen for pain relief as needed, but discuss with your healthcare provider about pain management strategies that may include physical therapy or alternative therapies.
- Track Symptoms: Keep a detailed symptom diary noting when symptoms occur and their severity, as this can provide valuable information for your healthcare providers.
- While awaiting further evaluations, focus on managing your symptoms:
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Self-Care Strategies:
- Consider dietary approaches to manage IBS-like symptoms, such as smaller, more frequent meals and a low-FODMAP diet.
- Stay hydrated and avoid alcohol, especially as it may worsen fatigue and balance issues.
- Practice relaxation techniques or mindfulness to help manage stress and anxiety, which can exacerbate your symptoms.
Conclusion:
You deserve clarity in your health journey, and persistent advocacy for yourself is essential. Continue to seek answers and don’t hesitate to consult specialists again if your concerns remain unaddressed. Your health is important, and I hope these steps bring you closer to finding the relief and answers you seek. If you have questions or need more assistance, feel free to reach out.
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