Desperate Search for Answers: A Mysterious and Worsening Condition
At just 22 years old and with no diagnosis, my situation has become increasingly terrifying and confusing. I wouldn’t wish this ordeal on anyone, not even my worst enemy. Currently, I find myself confined to my bed. I made the difficult decision to leave college just two months before completing my degree because my health deteriorated to the point where I could no longer get up. I experienced a collapse at work, and sadly, when EMTs arrived, they dismissed my condition and didn't take my distress seriously. As a result, I was forced to resign from my job. I am completely without answers, as my symptoms are all very vague and intermittent. What began as mild fatigue and persistent stomach discomfort has escalated dramatically. Initially, doctors reassured me that it was likely anxiety, but now, four years later, I struggle with blurry vision and significant pain in my eyes. My fatigue has become so overwhelming that I faint, and I often feel a strange buzzing sensation in my head and neck, particularly when I stand or even if I focus on minor details or nothing at all. My gastrointestinal issues have become unbearable. I frequently have to drink water after swallowing food just to get it down, which is accompanied by intense pain and bloating. Additionally, I experience excruciating discomfort in my throat and a strange ‘swooshing’ feeling in my upper abdominal area that triggers heart palpitations. The agony in my epigastric region feels torturous; at times, I believe I might not survive this. Coping with all of this feels utterly impossible. I find myself tossing and turning in bed, struggling to get through each hour. Despite my visits to the ER, I receive no help as imaging results show nothing. I haven’t undergone an EGD yet, and after four years of testing with still no solutions, I am at a loss. I’ll include my medical tests below for those interested in reviewing. While I know that this platform cannot substitute for my healthcare provider, I am seeking alternative perspectives that I can discuss with my doctor. Please, any help would be greatly appreciated.
Answers (1)
7/29/2025, 12:50:45 AM
OpenHealth AI
I'm truly sorry to hear about the challenges you're facing. It sounds incredibly overwhelming, and it's understandable to feel lost and desperate for answers after such a long struggle. Your symptoms — including severe fatigue, gastrointestinal distress, visual changes, and fainting — require a comprehensive approach to help identify their underlying causes and provide you some relief.
Main Points:
- Complex Symptoms: Various conditions could explain your symptoms, including autoimmune disorders, gastrointestinal disorders, and neurological concerns.
- Prioritized Next Steps: Engage with a healthcare provider, consider specific tests, and document your symptoms for effective communication.
Explanation:
Your experience sounds distressing, and when symptoms are vague, it can complicate finding a diagnosis. Conditions like Crohn's disease, lupus, and other autoimmune disorders can manifest in ways that affect the gut and lead to systemic symptoms, including fatigue and neurological issues. The combination of your symptoms — especially the gastrointestinal distress and the neurological sensations when standing — may suggest underlying issues needing thorough exploration.
Specific Next Steps:
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Prepare for Your Next Medical Appointment:
- Document your symptoms in detail, including when they occur, their severity, and any triggers or patterns you've noticed. Keeping a symptom diary for at least two weeks can provide valuable insights.
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Discuss Testing Options:
- Bring up the possibility of undergoing an esophagogastroduodenoscopy (EGD). This test may help identify any underlying issues in your esophagus, stomach, or upper intestine that can explain your gastrointestinal symptoms.
- Request blood tests to evaluate for autoimmune conditions, vitamin deficiencies, or infections that might not have been previously considered.
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Lifestyle Management:
- Stay well-hydrated, but approach food intake cautiously. Focus on small, frequent meals that are easy to digest (like bland foods) and consider working with a nutritionist if possible.
- Gradually incorporate relaxation techniques, as stress can exacerbate many symptoms. Gentle activities like deep breathing or gratitude journaling can provide slight relief.
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Seek a Specialist:
- If possible, consider consulting a gastroenterologist and a rheumatologist. They can provide specialized insight into your symptoms and may suggest further imaging or tests based on your presentation.
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Keep Advocating for Yourself:
- Don't hesitate to express your concerns at every appointment. It's essential to communicate clearly how severe and debilitating your symptoms are. If you're not being heard, look into seeking a second opinion.
I hope these steps provide some clarity and direction in what feels like an overwhelmingly complex journey. Remember, you're not alone in this, and advocating for your health is a powerful step forward. Please let me know if you need further guidance or specific resources!
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