Seeking Guidance and Support!
Hello everyone! I'm a 17-year-old girl, standing at 5'4" and weighing around 215 lbs. I’m currently prescribed propranolol, vyvanse, duloxetine, loratadine, and topiramate; plus, I'm a non-smoker. For quite some time, specifically since I was in the third grade (now I’m in my final year of high school), I’ve experienced various mysterious health issues. The right side of my body tends to tense up or spasm, and my left eye often drifts upward. Additionally, I frequently experience dizziness and have trouble maintaining my concentration. We’ve received several different diagnoses throughout the years, which include paroxysmal dyskinesia, dystonia, seizures, and even multiple sclerosis; however, none have been definitive. Currently, they suggest I might be having partial complex seizures, but EEG tests have consistently returned normal results. Since around 2018, there’s been a stable gliosis noted in my cerebral peduncle. As for my other health conditions, I have been diagnosed with dysautonomia, autism, ADHD, hypermobility spectrum disorder, and fibromyalgia. I visited the Mayo Clinic specifically for assessments related to HSD and fibromyalgia, and underwent a POTS test that yielded some perplexing results. My cardiologist at CHOA suspects there may have been an error in that testing, leading him to refer me to another specialist. There seems to be a pattern where, every year during the spring (March to May), I face some sort of health issue. In ninth grade, my knee would pop in and out of place, during tenth grade, I lost vision in my right eye (resulting in limited visibility, now reduced to colorful blobs), and in eleventh grade, I experienced a significant partial hearing loss in my left ear, which is now at 40%. At just 17, I’ve seen a multitude of doctors, but none have been able to identify the root cause of my problems. We've consulted various places, including the Mayo Clinic, CHOA, NEGA, and private practices, as well as multiple mental health services, especially when doctors presumed my symptoms were psychosomatic rather than physical. They often preferred sending me for repetitive evaluations instead of pursuing further medical tests. I’ve been contemplating reaching out on Reddit for a while, and I finally expressed this to my mother—Reddit seems to be a treasure trove of valuable information! If anyone thinks that my test results might be of use, I’m happy to share them. Thank you very much for taking the time to read this; any guidance or support would mean the world to me!
Answers (1)
9/9/2025, 12:50:54 AM
OpenHealth AI
Thank you for sharing your journey; it sounds both challenging and frustrating. From what you’re describing, you are dealing with a complex set of conditions, which can feel overwhelming. Firstly, it's clear that you need specialized support that considers both your physical and neurological symptoms.
Main Points:
- Your symptoms and multiple diagnoses suggest a complex medical picture that requires ongoing investigation.
- Focus on maintaining good communication with your medical team and consider a comprehensive approach to any new or recurring symptoms.
- Documenting your health patterns can be incredibly valuable for your care team.
Explanation:
Your experiences of muscle spasms, vision loss, and hearing impairment, along with the historical notes of gliosis and dysautonomia, show that your health issues are interconnected. The diagnoses you’ve received, including potential seizures and dystonia, indicate that your nervous system may be reacting in ways that are not fully understood yet. It’s important that your medical team continues to work together to find proper management strategies.
Given the complexity, it’s crucial to consult specialists, possibly in neurology and a multidisciplinary team that understands dysautonomia and fibromyalgia comprehensively. Additionally, having a consistent approach in terms of care is essential—this includes regular follow-ups and possibly advocating for further investigations if patterns of symptoms repeat.
Next Steps:
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Symptom Tracker: Start keeping a detailed record of your symptoms. Note when they occur, their intensity, duration, and any potential triggers (e.g., seasonal changes or stressors). This can help both you and your doctors identify patterns.
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Regular Appointments: Ensure you have regular follow-ups with your specialists. Discuss your health tracker in these appointments. If you feel some tests or referrals are necessary, advocate for your care.
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Support System: Engage with support groups specific to your conditions (such as online forums or local meet-ups). Knowing others who face similar challenges can provide emotional support and practical tips.
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Mental Health Check-ins: Continue addressing your mental health, as dealing with chronic illness can take a toll. Consider therapy or counseling, especially since mental and emotional well-being is crucial for managing physical symptoms.
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Family Involvement: Keep communicating with your family about your feelings and health concerns. Their support can be vital during times of medical consultations or when navigating complex healthcare needs.
Your persistence in seeking answers and support is crucial, and it’s excellent that you’re reaching out for help. If you ever sense your symptoms are worsening or are presenting new concerns, don't hesitate to communicate these promptly to your healthcare provider. You’re not alone in this, and with the right support, you can better navigate your health journey.
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