Struggling with Undiagnosed Symptoms for Years
At 23 years old, weighing 46 kg and standing at 162.6 cm, I have endured a range of perplexing symptoms for an extended period. These issues have been steadily intensifying, with episodes involving loss of consciousness and convulsions occurring unexpectedly—whether I'm standing, seated, or even lying down. Prior to these episodes, I often experience a peculiar numbness along with a sensation akin to ‘swooping’, accompanied by an intense warmth that radiates throughout my body, predominantly in the back of my head. There have been instances where I haven’t completely lost consciousness; rather, I feel those unusual sensations before beginning to convulse, allowing me to remain upright during those times. Additionally, I sometimes encounter episodes characterized by odd sensations in my head, leading to moments of zoning out. Following these occurrences, I am left with a persistent headache, coupled with aching and soreness throughout my body, a lingering shakiness, and an overwhelming sense of fatigue. On some days, these full episodes can happen repeatedly, though there are rare occasions when I may go a couple of days without experiencing them. Regarding my health assessments, I’ve undergone several blood tests revealing no issues with celiac disease, iron deficiency, or blood sugar levels. I have also undergone multiple Halter monitor tests, a cardiac CT scan, and EEGs—none of which indicated any abnormalities. Additionally, CT and MRI scans of my brain showed no concerning issues either. For years, I have been consulting with my general practitioner about these issues, but she has often brushed them off. Despite my repeated requests for a referral to a specialist, it never transpired. While she was on maternity leave, I briefly saw another doctor who facilitated a referral to a cardiologist. However, despite the extensive cardiovascular tests conducted, no underlying issues were revealed. Most recently, I was admitted to the hospital, where they scheduled an MRI of my brain and an EEG; unfortunately, the latter is not booked until November 24. I have approached my GP again, seeking a referral to a neurologist, but I am doubtful of any swift action from her. Compounding my situation is the fact that I will be moving out on my own in December, and given the bureaucratic nature of healthcare in my country, securing a new GP could take a long time—often months, if not years. The thought of not uncovering the cause of my symptoms before my move is stressful, and I fear the possibility of falling and confronting injury in solitude. The increasing frequency and severity of my episodes add to my anxiety, and I recognize the urgency to resolve this matter before relocating, yet medical procedures often proceed at a frustratingly slow pace in this area, leaving me feeling trapped in limbo. On a related note, I have been dealing with chronic pain, particularly in my neck, hips, and shoulder blades. My doctor suspects I might have hypermobile Ehlers-Danlos syndrome (hEDS). Extensive testing has revealed many symptoms aligned with hEDS, but I am uncertain if they correlate with my episodes. Moreover, I have been formally diagnosed with auDHD by a psychiatrist, for which I take 30 mg of Vyvanse each day. Unfortunately, my GP is reluctant to adjust my dosage due to my episodes, thereby affecting my performance during my undergraduate and graduate studies.
Answers (1)
7/14/2025, 4:40:42 AM
OpenHealth AI
It sounds like you're navigating a complex and distressing set of symptoms, which can be incredibly frustrating, especially when seeking diagnosis and treatment. Your experiences of episodes involving loss of consciousness, convulsions, and other neurological sensations, combined with your struggles to get timely referrals, warrant attention and action.
Main Points
- Monitoring Symptoms: Given the complexity of your symptoms, keeping a detailed log can help clarify the situation for future providers.
- Next Steps for Referral: While you're currently waiting for specialist appointments, there might be proactive steps you can take to quicker access care.
- Symptom Management: Focus on strategies to manage your symptoms and reduce injury risk as you transition to living on your own.
Explanation
Your symptoms, including loss of consciousness and convulsions, along with numbness and warmth, require careful tracking and intervention. It's understandable to feel anxious about not having a diagnosis and managing these unsettling episodes on your own. Since past tests have not revealed any issues, it’s crucial to maintain communication with healthcare providers and push for specialist evaluations.
Specific, Prioritized Next Steps
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Keep a Symptom Diary: Document each episode's time, duration, and any preceding sensations, activities, or triggers. Include notes on your headaches, fatigue, and any other physical symptoms that follow. This will not only help in discussions with healthcare providers but may also highlight patterns that need addressing.
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Request Clear Follow-ups: Contact your GP's office to formally request a referral to a neurologist, emphasizing the urgency related to your scheduled move. If your GP continues to dismiss your concerns, consider reaching out to other healthcare providers in your area or academic institution who may have more experience with your conditions and could expedite a referral. Feedback from a neurologist can provide insights on whether your convulsions are related to potential Ehlers-Danlos syndrome (hEDS) or another neurological condition.
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Plan for Safety: As your moving date approaches, develop a safety plan for living alone. This may include:
- Informing friends or family about your condition and asking them to check-in regularly.
- Considering emergency contacts or local services for assistance if you experience an episode.
- Establishing a routine that minimizes triggers (e.g., staying hydrated, managing stress, and getting sufficient rest).
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Managing Pain and Symptoms: For your chronic pain, explore gentle exercise options, such as physical therapy, tailored exercises for hypermobile EDS, or even mindfulness techniques to help cope with anxiety and manage pain. If possible, discuss with your GP about referring you to a physical therapist who understands these conditions.
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Academic Support: Since you are navigating your studies, explore options for academic support through your institution, like counseling services or disability services, which may assist in managing your coursework during this challenging time.
Conclusion
While the bureaucratic nature of the healthcare system can often delay progress, being proactive in documenting your symptoms and requesting referrals is vital. Remember that your health and safety come first, so take small, manageable steps towards making your living situation as secure as possible as you continue to seek a resolution for your symptoms. Please feel assured that you're doing everything you can to advocate for your health, and I hope you find the right answers soon. If you have any further concerns or need assistance with specific strategies, feel free to reach out.
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