Struggling to Find Answers: A Journey of Despair
I’m a 29-year-old woman, 5’3”, currently weighing 145 pounds, fluctuating between 130 and 150. I reside in Southwest Louisiana. I have been diagnosed with moyamoya—an uncommon, progressive neurological condition that leads to strokes and seizures. This diagnosis came after I suffered two strokes at the age of 21. At present, my medication regimen includes stool softeners, 30mg of Adderall taken twice daily to manage pain and fatigue, and 2mg of Diazepam. Since the age of 13, I have been on a relentless quest for a proper diagnosis, spanning 16 years without substantial help from medical professionals. Initially, my concerns were dismissed as “schoolitis,” suggesting I simply didn’t want to attend school. Later, it was labeled as depression; understandably, anyone in persistent pain would feel down. Now, I am deeply worried as my 15-year-old sister is exhibiting identical symptoms that plagued me during my earlier years. I am determined to prevent her from experiencing a deterioration of her health like mine has. I desperately need guidance and would appreciate any suggestions on where to turn for assistance. For as long as I can remember, I’ve battled severe constipation, often going without a bowel movement for anywhere between 10 to 14 days, and I also suffer from acid reflux. On particularly difficult days, it feels impossible to eat without feeling nauseous. I frequently experience weakness, dizziness, lightheadedness, and relentless fatigue. My main concerns revolve around severe back pain and exhaustion. The discomfort is localized along the sides of my neck and in the middle of my back, right beneath my bra strap, about 5-6 inches down on either side. Living like this has become unbearable, and I find myself losing hope. I need insights on what tests I should pursue and what type of specialist I ought to consult. I feel lost and uncertain about how to proceed on this arduous journey towards recovering my health.
Answers (1)
3/27/2025, 8:30:54 PM
OpenHealth AI
I'm truly sorry to hear about what you’ve been going through, and it’s commendable that you are seeking help not just for yourself, but also for your sister. It's understandable to feel overwhelmed, especially after such a lengthy journey with health issues. Here’s how you might proceed:
Key Points
- Your symptoms are complex, involving neurological aspects and gastrointestinal issues.
- It’s vital to consult specialists who can provide focused care for both moyamoya and your digestive health.
- Keeping a detailed record of your symptoms can aid in future consultations.
Explanation
Moyamoya and its related symptoms can significantly impact your quality of life. The constipation, acid reflux, fatigue, and pain you're experiencing could be interconnected or influenced by your primary condition. Fluctuating weight and digestive issues like severe constipation need attention, especially since they can lead to further complications if not managed properly.
Next Steps
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Consult a Neurologist and a Gastroenterologist: These specialists can conduct thorough evaluations related to your moyamoya condition and gastrointestinal health. They will help interpret your symptoms in a broader context.
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Symptom Diary: Keep a journal for at least a week that records your daily symptoms, noting what you eat, bowel movements, energy levels, and pain. This will provide valuable insights for your doctors.
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Pain Management: Discuss your back and neck pain with your healthcare provider. Physical therapy may be beneficial, and they can prescribe appropriate methods to manage this discomfort based on your current health situation.
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Dietary Adjustments: Since you are struggling with nausea and acid reflux, consider smaller, frequent meals that are easier to digest. Avoid spicy, fatty, or highly acidic foods that could worsen your symptoms. A diet rich in fiber (once bowel movement issues are addressed) may also help with constipation.
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Exercise as Tolerated: Gentle physical activity (like walking, if your fatigue allows) can help improve digestion and overall well-being. Listen to your body and adjust accordingly.
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Mental Health Support: Given your long journey and the emotional burden, a mental health professional may provide ways to cope with ongoing anxiety and depression, supporting your overall recovery process.
I understand this is a daunting path, but it’s important to stay connected with healthcare providers who can help you navigate these challenges. You're not alone, and seeking the right support is a positive step forward. Let me know if you need more specific advice or resources!
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