Nearly Two Years Battling an Undiagnosed Illness with Ongoing Symptoms
30-year-old male from Canada. For almost two years now, I have been grappling with a perplexing illness that has rendered me unable to eat food without experiencing severe abdominal discomfort, nausea, and vomiting. The pain typically initiates around my belly button, often shifting to the left side or the opposite direction. During particularly intense episodes, I can feel discomfort in both areas, and at times, it radiates upward toward my stomach and even into my chest. The nature of the pain varies, but commonly includes throbbing, squeezing sensations, deep burning, and cramping, often accompanied by debilitating headaches and tremors. These episodes leave me in a fetal position for hours, struggling to breathe and trying desperately to remain still. Any movement, conversations, odors, or sounds exacerbate my nausea and pain, prompting quicker bouts of vomiting. At the moment, I am recovering from an episode that lasted approximately six hours. Despite countless medications and extensive tests, including all offered procedures except for an endoscopy, nothing has effectively alleviated my symptoms. My medical team, comprised of various doctors and specialists, seems uncertain about my situation and is reluctant to pursue further options until I undergo the endoscopy. If everything goes well, I might face a waiting period of 6 to 12 months before this procedure can take place. For now, their advice remains the same: endure, manage my symptoms as best as I can, and hope for the best. Due to the limited intake of liquid calories on certain days, my excessive weight has been the main factor sustaining me thus far, but I am increasingly worried about my physical limits. My BMI is still above the threshold necessary for medical interventions such as hospitalization or feeding tubes, which I find absurd given that I have lost more than a third of my body weight, mostly within the first few months. Currently, I can only manage between 700 to 1050 calories on good days when I feel capable of drinking anything. I am aware that this is not a viable long-term solution, yet I feel helpless about what my next steps should be.
Answers (1)
6/24/2025, 4:20:53 AM
OpenHealth AI
I'm truly sorry to hear about your ongoing health challenges and the significant impact they have on your daily life. It’s understandable to feel frustrated and helpless in your situation. Given your concerns and the complex nature of your symptoms, I’d like to provide some supportive guidance that might help as you await further evaluation.
Main Points
- Monitor Symptoms Closely: Keep a daily journal of your symptoms, their triggers, and your dietary intake.
- Dietary Adjustments: Implement small, frequent meals with easily digestible foods when possible.
- Engage with Your Support Network: Involve friends or family for emotional support and assistance in managing care.
Explanation
Your symptoms are quite severe and could stem from multiple causes, such as gastrointestinal issues, motility disorders, or other underlying conditions. The variability in your pain, its location, and accompanying symptoms like headaches and tremors suggest a complex issue that likely requires specialized care.
It's important to continue documenting your experiences, as this can provide valuable insights for your healthcare providers and help identify potential triggers or patterns associated with your episodes.
Next Steps
-
Symptom Diary: Start a symptom diary noting:
- When the pain occurs, its severity, duration, and specific location.
- Foods consumed before episodes, even if they are minimal, to identify potential triggers.
- Other symptoms accompanying your episodes (e.g., headaches, nausea, any specific movements that worsen the pain).
-
Dietary Modifications: Aim to consume smaller, more frequent meals rather than larger ones. Focus on bland, low-fiber foods that are typically easier on the stomach, such as:
- Rice, bananas, applesauce, toast (the BRAT diet).
- Stay hydrated with clear fluids if possible, as dehydration can exacerbate symptoms. Consider electrolyte solutions if you struggle to maintain hydration.
-
Engagement with Healthcare Team: If you haven’t already, consider discussing:
- The urgency of the endoscopy given the severity and chronicity of your symptoms.
- Exploring other specialist opinions or options for expedited evaluation, considering your distress and weight loss.
-
Emotional and Practical Support: Seek support from friends, family, or mental health professionals to discuss your feelings and concerns about the situation. Engaging in support groups for those with chronic illnesses can provide a sense of community and understanding.
-
Emergency Indicators: If you experience severe worsening of your symptoms, such as persistent vomiting, inability to retain fluids, or signs of dehydration, seek immediate medical assistance.
Final Thoughts
It's important to acknowledge that while it may feel like you're in a waiting pattern right now, taking proactive steps can empower you and potentially help manage your symptoms better. You're not alone in this; seek out support as you navigate through these challenges. If there’s any specific aspect you’d like to delve into further or discuss, please let me know.
Related Questions
Liver Mass Assessment
Patient Profile: - Age: 61 years - Height: 5'9" - Weight: 240 lbs - Gender: Female - Lifestyle: Non-drinker, non-smoker, no illicit drugs Current Medications: - Atenolol 10mg (morning and evening) - Rosuvastatin 40mg (evening) - Duloxetine 60mg (evening) - Spironolactone 25mg (recently added) - Jardiance 10mg (recently added) Medical History: The patient has a notable history of multiple pheochromocytomas and paragangliomas, having undergone surgery on eight occasions. According to scans performed three years ago, two subcentimeter retroperitoneal masses were identified, suggestive of potential paraganglioma. Additionally, she suffers from secondary polycythemia and possesses the PHD1 gene mutation. Previously, she received treatment at a prominent research institution in the United States. However, her endocrinologist has since retired and returned to their home country. Current Condition: At present, she is mostly asymptomatic. However, in January 2026, she experienced a concerning event requiring an ambulance transport to a local emergency room, where her oxygen levels registered at 88-89%. This incident was unsettling, given her extensive medical history. The emergency physician initially diagnosed her with congestive heart failure (CHF), but upon discharge, her family medicine doctor suggested pneumonia. During her hospital stay, a cardiologist—who has never managed a pheochromocytoma patient—recommended a chemical stress test. A CT scan performed on her chest revealed a 3.2 x 2.5 cm mass located in the left lobe of her liver. Her blood tests typically show elevated levels related to pheochromocytomas; however, the laboratory does not conduct resting catecholamine testing, which leads to unreliable results, despite them being consistent over time. Furthermore, she has received care at major hospitals in Minnesota and both leading hospitals in Cleveland, Ohio. Unfortunately, when she required her last surgery, the tumor board declined her case, citing an unfavorable risk-benefit ratio. This leaves her without a specialist in pheochromocytomas. Request for Guidance: The patient is seeking advice or recommendations for her current health situation and management of her conditions.
Concerns About My Daughter's Morning Health Issues
My 17-year-old daughter experiences troubling symptoms each morning, particularly on days when she needs to rise early for school or work. She often wakes up feeling dizzy and nauseated, accompanied by a rapid heartbeat exceeding 100 beats per minute. This situation prevents her from being able to eat and may persist for several hours, or in some cases, throughout the entire day. Standing at 5 feet 8 inches tall (172 cm) and weighing 121 pounds (55 kg), her physical health otherwise seems fine. I have a personal history of inappropriate sinus tachycardia (IST), which is why I take beta-blockers for management. A few years ago, she consulted a cardiologist regarding her frequent episodes of near-fainting, who recommended increasing her water intake and adding more salt to her meals. Given the persistent nature of her symptoms, I am contemplating whether a follow-up appointment with the cardiologist is warranted, especially since all previous tests, including ECG and ultrasound, came back normal. This situation significantly affects her daily life, restricting her ability to engage fully in school and work. Any suggestions would be greatly appreciated!
Concerns Regarding Neurological Health
Hello! I received an epilepsy diagnosis back in 2008, and throughout this time, various MRI and CT imaging studies have indicated issues related to cerebral function and encephalopathy. Despite consulting multiple neurologists over the years, I’ve found that none of them appear worried about the encephalopathy aspect. Shouldn’t this be something to take more seriously? My cognitive abilities, including memory and vision, have noticeably deteriorated as time has passed. I’m feeling lost since my previous neurologists have not acknowledged my concerns adequately. If anyone could offer guidance or suggest resources, I would greatly appreciate it. In addition to epilepsy, my other medical conditions include Narcolepsy, Lynch Syndrome, Migraines, a mutation associated with HLA-B27, and Hashimoto's disease, along with others that escape me for the moment. Currently, I’m on a medication regimen that includes Lamictal, Xcopri, Hydroxyzine, Solifenacin, Zoloft, Wellbutrin, Sunosi, Aimovig, and Famotidine.
Navigating the Complexity of Symptoms: Is It PCOS or Something Else?
While I’m not an expert in self-diagnosis, I find myself puzzled by an array of symptoms that overlap, making it challenging to pinpoint what might be affecting my health. Let's break down my situation: - Age: 25 years, Gender: Female, Height: 5’1”, Weight: 125 lbs. - The last menstruation occurred in June 2024. Prior to this, my menstrual cycle was remarkably consistent since I was around 12 years old, typically without severe premenstrual symptoms, heavy flow, or irregularities. - Various blood tests over time reveal that most hormone levels fall within normal ranges, with the exception of estradiol (persistently between 10-20) and progesterone (remaining below 0.2). - A couple of results raised some concerns for me personally, even if my doctors weren’t alarmed: my morning cortisol was measured at 13.4 and in the afternoon at 9.49. One test indicated a TSH level of 2.35, which increased to 3.93 months later. My fasting glucose consistently hovers around 80, whereas random glucose levels were recorded at 68, and postprandial glucose was 65. - An MRI indicated a "deviation of the pituitary stalk, potentially linked to a small pituitary adenoma." - An ultrasound revealed "multiple oval, well-defined, anechoic images with posterior acoustic enhancement, measuring a few millimeters, located around the edges of the stroma." - The symptoms I am experiencing include disrupted sleep (frequent awakenings, particularly around 3 AM, making it hard to resume sleep), lack of energy, difficulty in weight management, persistent hunger, heightened anxiety, and hair thinning. - Birth control (drospirenone and ethinyl estradiol) exacerbated nearly all of my symptoms, leading me to discontinue use after two weeks despite experiencing a withdrawal bleed. - My lifestyle is generally healthy; I consume a lot of whole foods, engage in weightlifting, and run regularly. Given that I’ve received a diagnosis of PCOS, I’m wondering if this assessment seems accurate. What options do I have moving forward, especially since the contraceptive method didn’t provide relief and I appear to exhibit signs of additional complications such as thyroid issues or cortisol dysregulation?
Understanding My Experience with Overdose-Related Symptoms and Behavior
25 years old, 165 cm tall, and weighing 70 kg. Summary: After sharing a complaint about my interactions with paramedics, I've taken a moment to reflect on their feedback and review the situation through the footage. I recognize that my conduct during those moments was inappropriate, and I am filled with remorse. Subsequently, I have retracted my complaint and am now seeking mental health support. I desire to clarify certain aspects since my medical records do not completely align with what I went through. Below, I detail my symptoms. Yesterday, I made a post on the AskDoctors forum, hoping for insights regarding my condition. The advice I received prompted a self-realization that had evaded me until now. Initially, I was outlining a grievance against paramedics who doubted the legitimacy of my seizures and accused me of feigning the experience. My response was not only disproportionate but also hostile—I yelled, wept, and labeled them as heartless. Such reactions were completely unwarranted and unjustifiable. Ultimately, I was physically stable, with vital signs indicating no critical issues; there were only temporary fluctuations in my blood work, which shouldn’t have raised alarms. I feel profound regret over my conduct during that encounter. Watching the footage incites feelings of self-disgust. I’ve decided to withdraw my complaints and am committed to mental health resources. I opted to delete my previous post since it contained sensitive information about my professional and educational background; I was worried it might provoke disciplinary action from my university, which I cherish as my career gives my life meaning. I admit to feeling cowardly in this respect. The initial reason for my inquiry was a desperate need for clarity about the symptoms I experienced, as my discharge documentation omits much of what transpired in the hospital and the subsequent three days. I greatly value the input I’ve received and hope to gather more perspectives. I fully acknowledge my wrongdoings and find my previous behavior abhorrent. I understand how challenging it is for emergency personnel to fulfill their duties when faced with such a situation. I’ve discussed with family and friends the importance of exercising discretion when contacting emergency services and ensuring it’s truly necessary. I regret taking up valuable resources that could have been reserved for individuals in genuine need of urgent care. My actions were shameful, not just for me but also for my colleagues who work in emergency services; I genuinely believe the clinicians should have distanced themselves from my case entirely. I've canceled my appointment with the neurologist, but I would genuinely appreciate insights from others on this subject. Could excessive doses of sertraline, propranolol, promethazine, and alcohol induce psychological seizures? Is it possible for these seizures to recur? Were my hallucinations indicative of some kind of psychosis? During the episodes, I saw hair-like formations everywhere and everything seemed to emit a blue glow. In the hospital, I consistently perceived doctors passing by. At home, the LED lights appeared to move, and I often caught glimpses of faces in my peripheral vision. There were also auditory experiences, such as hearing things that weren’t present, as confirmed by my friend. Initially at home, I was unaware I was having seizures, although I did hear police officers numbering them and acknowledging them as such. I had three episodes where I was placed in the recovery position. In my medical notes, I mentioned experiencing ten seizures throughout the night, though I can’t verify this. I was seemingly in a continuous cycle of them. I recall at least once drooling uncontrollably and my hands looked peculiar; on one occasion, I screamed when I regained consciousness due to an awkward hand position. I also experienced significant neck pain and discomfort in my feet. I know I fell twice while hospitalized; fortunately, my mother was there to catch me each time, so I avoided serious injury. I was never alone in the facility. Everything seemed to settle down after approximately three days, right around my third visit. I recall a persistent ache at the nape of my neck that left me feeling drowsy, often drifting in and out of consciousness and repeatedly asking for the time. It was a never-ending ordeal, and although I had little appetite, I did not vomit at all. Reflecting on this whole episode leaves me feeling as if it were entirely fabricated. I struggle to articulate it. Conversations about care options unfolded around me, yet I grasped little of what was being discussed. I often replied with “yes” or sought validation from my mother. I remember thinking it was remarkable that my mum had glasses with water in them; I even imagined one of my cats perched on my aunt’s shoulder. Overall, it felt akin to a terrifying drug experience. I do have videos capturing my behavior at home, though I cannot recall anything from the hospital. I often awakened with either my mother, aunt, or medical staff restraining me. Could it all stem from psychological causes? Is it possible that the medications led to a psychotic episode where I convinced myself I was experiencing seizures and on the brink of death? After they subsided, I felt like an automaton for weeks, plagued by involuntary muscle jerks—primarily in my legs and neck. I sincerely hope these symptoms do not return. I intend to avoid emergency care unless it’s absolutely necessary. I seek nothing more than to comprehend what transpired. Thank you for your thoughts.