Seeking Insight on Unusual Medical Symptoms
Greetings! Allow me to share a bit about my situation. I’m an 18-year-old female planning to attend college this fall, but I urgently need some answers regarding my health. I’ve endured four fractures in the same area of my wrist, specifically at the growth plate, the last of which occurred when I was 11 years old. This led to the onset of Complex Regional Pain Syndrome (CRPS), which eventually spread throughout my body. Furthermore, I experienced a gastrointestinal illness that introduced a persistent burning sensation in my stomach, leading to significant weight loss—transitioning from being morbidly obese to slightly overweight in just a few months. I also deal with a variety of conditions, including Postural Orthostatic Tachycardia Syndrome (POTS), hypermobile Ehlers-Danlos syndrome (hEDS), Mast Cell Activation Syndrome (MCAS), and digestion issues. As a result, I depend on a feeding tube and a port for hydration and nutrition. While inconvenient, this system has proven to be effective. Recently, I've been grappling with a set of peculiar symptoms that have become increasingly bothersome. I've encountered significant hair loss with no autoimmune indicators present, intermittent hallucinations, and occasional yellowing of my skin and sclera—despite normal liver function tests. However, my latest issue is particularly frustrating. At night, I experience unusual episodes with my vision. These commence with tingling sensations around my eyelids, signaling the onset of discomfort. Following this, I endure a burning and stabbing pain in my eyes—akin to having a sharp object poking at my cornea—accompanied by blurred vision that sometimes makes seeing nearly impossible. The most alarming aspect is the shadowing effect I observe; my eyes feel pressured, the sclera can redden, and I notice areas of light and dark developing within my vision rather than the usual uniform brown. I’ve sought assistance from optometrists, yet they have not found anything unusual structurally. A neurologist suggested the possibility of ocular migraines, which left me feeling embarrassed after reaching out for advice on Reddit, only to be told that was probably not the case. I managed to record a video capturing these bizarre visual disturbances, confirming that the shadowing is not merely an optical illusion caused by lighting. I would greatly appreciate any insights or suggestions you may have. I am more than willing to answer any questions regarding my symptoms—there’s a lot to unpack here. Though I can't share images directly, if they are necessary for better understanding, feel free to message me. This experience is quite unsettling, and I’m eager to find some clarity!
Answers (1)
7/4/2025, 12:50:50 AM
OpenHealth AI
Thank you for sharing your complex medical history and current symptoms. It sounds like you are facing a challenging situation with multiple interconnected health issues, and I want to help you navigate this.
Main Points:
Your symptoms, especially the eye-related issues, warrant further observation and a comprehensive approach. The tingling around your eyelids, pain, blurred vision, and the peculiar shadowing effects could indicate several underlying mechanisms due to your existing conditions.
Explanation:
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Visual Symptoms: Your description of the nighttime eye episodes, including tingling, burning pain, and shadowing, might suggest several potential causes, such as ocular migraines, which can sometimes present with unique visual disturbances and pain. However, given your complex health history, they could also be affected by your neurological condition due to CRPS or even be manifestations of a systemic response.
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Other Considerations: The combination of hair loss, gastrointestinal issues, and skin yellowing could suggest additional systemic processes at play. While you've noted normal liver function tests, the yellowing (jaundice) and rapid weight loss should be monitored closely to rule out any metabolic or nutritional deficiencies exacerbated by your gastrointestinal state.
Next Steps:
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Keep a Symptom Journal: Track your visual episodes, including the frequency, duration, and any triggers you notice (e.g., stress, dietary factors, lighting). Also, document your other symptoms such as hair loss, gastrointestinal discomfort, and any changes in your overall health. This will help you provide detailed information to your healthcare providers.
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Follow-Up with Specialists: Given your complex symptoms and existing conditions, consider revisiting your neurologist for a specialized assessment focusing on your ocular symptoms. You may also benefit from consulting a rheumatologist or a specialist in complex pain syndromes to evaluate potential interactions between your conditions.
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Nutritional Support: Since you rely on a feeding tube and have dietary restrictions, ensure your nutritional intake is adequate. This is crucial since malnutrition can exacerbate neurological problems and contribute to symptoms like hair loss. Discuss with your nutritionist if possible, focusing on getting balanced nutrition tailored to your conditions.
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Manage Stress: Given the physical and emotional toll of your symptoms, engaging in stress management techniques such as mindfulness, meditation, or gentle yoga might help alleviate some discomfort and improve your overall well-being.
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Visual Health Monitoring: To address the eye symptoms, you may want to consider a consultation with an ophthalmologist who specializes in neuro-ophthalmology. They can further investigate potential neurological causes of your visual disturbances.
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Stay Hydrated: Keeping well-hydrated through your port system is essential, as dehydration can worsen many symptoms, including headaches and possibly visual issues.
Your symptoms are understandably concerning, and it's commendable that you're seeking answers. You're not alone in this journey, and by taking these actionable steps, you may find more clarity and support. Please remember to communicate openly with your healthcare team about your ongoing concerns and any changes in your symptoms.
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