Fear of Dying Before Having a Diagnosis
I’m a 30-year-old female grappling with anxiety, depression, endometriosis, and the lingering effects of long COVID. At this moment, the weight of my situation feels overwhelming, and I can't help but want to cry. Each day, I come across stories in this group about individuals spending years seeking answers, yet I feel an immense sense of frustration and like I might just be imagining my symptoms. I recently had an appointment with a new primary care physician, who wouldn’t refer me to a rheumatologist until one of my lab tests yielded a positive result. The initial test results have started coming back, revealing: - A rheumatoid factor level greater than 10 - Thyroid-stimulating hormone (TSH) level within normal limits - No deficiencies in vitamins. Now, I find myself anxiously awaiting the results for the ANA test, bracing myself for disappointment. I recognize it sounds irrational to fear being let down over something like this, but all I seek are answers. I previously underwent the ANA test in January, which came back negative. It turns out an extra vial was available, so I reached out via the patient portal to request CRP and ENA tests using that vial. I hope I didn’t overstep; although this is only my second appointment with her, she hasn’t given me much confidence in her support. Regarding the lab tests that showed abnormal results, here’s what I have: - RDW (Red Cell Distribution Width) elevated - Low MCHC (Mean Corpuscular Hemoglobin Concentration) for the fifth consecutive month, not sure what that indicates - Platelet count borderline high at 380 - My lipid panel results were concerning, yet she assured me they are likely due to Abilify, a medication I recently started - Low erythrocyte count - Low hemoglobin levels - Low hematocrit levels - High RSW standard deviation (for the fifth consecutive month) - Low anion gap (also for the fifth consecutive month) - Low calculated osmolality (for the fifth consecutive month) My symptoms include: - Persistent joint pain, particularly in my hands - Unexplained bruising - Cold sweats - General malaise and fatigue - Irregular heartbeat - A chronic cough - Skin rashes on my cheeks, chest, and arms - Lesions on my scalp - Difficulty swallowing, as if there’s something lodged in my throat - Frequent respiratory infections - Headaches - Intermittent sharp pain and pressure in my chest - Recently learned I have endometriosis, with a chocolate cyst on my right ovary that is causing significant abdominal and pelvic discomfort - Scalloped and swollen tongue - Numbness and tingling sensations in my legs and feet - Dry, irritated eyes accompanied by pressure - Swollen glands - Hair thinning - Symptoms of Raynaud's phenomenon - General swelling throughout my body All I truly wish for is to feel better.
Answers (1)
9/12/2025, 7:40:49 PM
OpenHealth AI
I'm really sorry to hear that you're feeling overwhelmed by your health situation and the uncertainties that come with it. It's completely understandable to feel anxious and frustrated, especially when you're searching for answers while dealing with multiple symptoms. You deserve support and clarity during this time.
Based on the information you shared, you have several lab results revealing abnormal markers, along with a range of concerning symptoms. It seems you’re seeking a definitive diagnosis, which is a natural and valid desire. Let's break this down into manageable steps to help you feel more empowered and focused.
Key Points
- Current Lab Findings: Abnormal results can indicate underlying issues, but they don't confirm a specific diagnosis yet.
- Symptoms Monitoring: Keep a close eye on your symptoms, as tracking changes can help provide useful information to your healthcare provider.
- Proactive Steps to Take: You’re already taking initiative by engaging with your healthcare team and requesting additional tests.
Explanation
-
Lab Results:
- Rheumatoid Factor: This test can be elevated in various autoimmune conditions but is not definitive on its own.
- Low Blood Values: Your low hemoglobin, hematocrit, and erythrocyte count suggest possible anemia, which can be linked to various causes, including inflammation or chronic disease. These results should be addressed with specific attention.
- Other Tests: Elevated RDW and borderline high platelets can also be indicative of underlying conditions but need to be interpreted in context.
-
Symptoms: The combination of joint pain, skin issues, and systemic symptoms raises the possibility of an autoimmune condition among other things. Your experience with endometriosis adds another layer of complexity, as chronic pain and autoimmunity can overlap.
Next Steps
-
Symptom Diary: Start a daily log of your symptoms, including when they occur, their severity, and any factors that alleviate or worsen them. This can be shared with your doctor and might help guide your next steps.
-
Follow-Up on Lab Tests:
- Continue awaiting the results for the ANA test, as this can be vital for diagnosing autoimmune conditions.
- Once you receive the results, consider discussing the findings comprehensively with your primary care provider. If you're unsatisfied with the response, don't hesitate to seek a second opinion. Your health and comfort are priority.
-
Set Clear Goals for Your Next Appointment: Prioritize what you want to address at your next appointment, such as:
- The relationship between your symptoms and the potential conditions suggested by your lab results.
- The need for a referral to a rheumatologist, particularly if autoimmune concerns are suspected.
-
Connect with Support Groups: Alongside medical advice, connecting with others facing similar health challenges can provide emotional support and practical tips. Sharing your experiences in such communities might alleviate feelings of isolation.
Reassurance
Remember, reaching out and being proactive about your health is incredibly important. It's normal to feel disheartened by the waiting game of testing and appointments, but you are actively taking steps toward understanding your health better, which is commendable. Be gentle with yourself during this process, and focus on what you can control. Take one step at a time.
If you need any additional information or strategies to cope with anxiety during this waiting period, please let me know. You’re not alone in this journey.
Related Questions
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.
A Mysterious Illness That Resembles Strep Throat
As an 18-year-old college student, standing at 5'4" and weighing 140 pounds, I maintain an active lifestyle. I do not smoke or have any preexisting health issues, aside from the vitamins and supplements I take daily. Approximately five days ago, I began to feel unusually fatigued and achy. Within just a day, my symptoms escalated to include a high fever reaching between 101°F and 102°F that ibuprofen couldn’t seem to alleviate. I experienced extreme tiredness that kept me bedridden all day, along with a persistent headache and intense throat pain, which was compounded by swollen lymph nodes and the familiar white patches often associated with strep throat. Having dealt with strep throat before, I recognized a need for antibiotics. Two days into feeling unwell, I visited an urgent care facility for an assessment and received a rapid strep test, which unfortunately came back negative. I recalled a previous incident where my rapid strep test also indicated a false negative, only for the culture sent for further testing to confirm the presence of strep bacteria. Given my symptoms and the findings from the examination, the healthcare provider prescribed Cefdinir, as I am allergic to amoxicillin, despite the negative rapid test results. The antibiotics proved effective, and I felt nearly back to normal, leading me to believe that my culture results would also come back positive for strep, suggesting a recurrence of my previous infection. However, I received the culture results yesterday, and to my surprise, they came back negative for strep. While I lack medical expertise, I’ve been led to believe that false negatives in cultures are exceedingly rare. Now, I find myself puzzled about what kind of bacterial infection I might have had if it wasn’t strep. Any insights or information regarding my situation would be greatly appreciated. Thank you!
Understanding Recurrent Symptoms: Are They Histamine-Related?
Hello, health professionals, I am seeking your expertise regarding a variety of symptoms I have been experiencing intermittently over the years. While they appear linked, I'm having difficulty pinpointing their root cause. **Personal Summary:** - 27 years old, Female - Non-smoker (formerly vaped for about eight years, cessation initiated two years ago) - No diagnosed autoimmune conditions - Background of anxiety (which might exacerbate some symptoms, though it doesn't account for all) - Currently taking Flonase and a multivitamin **Skin Reactions:** - I've dealt with recurring itchy rashes and hive-like bumps since childhood. They manifest suddenly and usually resolve without intervention. - These rashes are often itchy, can be raised, and tend to appear sporadically without identifiable triggers. - Antihistamines provide consistent relief, leading me to suspect a role of histamines in these eruptions. - These episodes do not align with typical contact allergies or classic food allergies. - They can happen multiple times daily, and I've often dismissed them as merely anxiety-related rashes. - Sometimes the itching precedes the visible rash, while other instances present with a red, inflamed area that stirs inquiries about my well-being from others. **Foot Discomfort:** - Over the last few years, I’ve encountered severe itching on the soles of my feet. - These episodes typically include small pale or white spots with redness surrounding them, occasionally featuring a red center. - Itching intensity can be overwhelming, yet these lesions usually arise suddenly, - They frequently improve upon avoiding scratching and may resolve within a range of 30 minutes to two days. - The first episode was triggered after swimming in a freshwater lake, though I’ve also experienced it while wearing specific footwear like Crocs or boots, but not consistently. - Certain events coincide with my typical skin rash, hinting at a potential systemic condition rather than merely a localized issue. - The symptoms do not mirror those of warts, ringworm, or fungal infections. **Ear and Sinus Issues:** - Itchy ears have been a recurring issue for the past few years; I initially attributed it to overly aggressive cleaning with cotton swabs, which I realize is harmful. - I have a history of chronic sinus problems, including post-nasal drip and regular ear infections. - The inflammation appears to flare up sporadically rather than constantly. - Recently, I experienced a painful ear issue that began with what I thought was a pimple. The next day, my ear was swollen. After visiting a clinic, I was diagnosed with a double ear and sinus infection, treated with antibiotics. My pain persisted, leading to a follow-up with my primary care physician, who prescribed Flonase and noted ongoing nasal inflammation. Missing doses led to increased ear discomfort, prompting me to take Flonase more regularly. Unfortunately, a recent flare of swelling and discomfort in my ear led me to consider consulting an ENT specialist. **Gastrointestinal Symptoms:** - I was diagnosed with gastritis through an upper endoscopy procedure. - Testing for H. pylori returned negative. - I've since developed food sensitivities and gastrointestinal discomfort not previously experienced. - I saw significant improvement after removing gluten and dairy from my diet, with tests for celiac disease yielding negative results. - Symptoms tend to flare up in response to stress or specific food intake rather than being a constant presence. **Additional Context:** - A history of childhood asthma (now occurs infrequently) - Sensitivity to heat - Past instances of feeling lightheaded, resembling vasovagal symptoms, alongside vertigo - Symptoms across various systems often flare together, but not in every instance - While my anxiety can intensify symptoms, both antihistamines and diet modifications have had notable positive effects **My Inquiry:** While I don’t wish to self-diagnose, I'm curious if my range of symptoms might suggest: - Histamine intolerance - Mast-cell overactivity (not necessarily MCAS, but an increased reaction) - Physical or contact urticaria I'm primarily seeking: - Recommendations for a suitable specialist - Insight on whether this symptom pattern fits a recognized mechanism - A clearer understanding of what warning signs to be concerned about **Summary:** I contend with a long-standing pattern of episodic itchy rashes and hives, significant but transient foot itching along with bumps, persistent ear irritation coupled with sinus problems, and gastritis accompanied by food sensitivities that improved on an elimination diet. Antihistamines aid multiple symptoms. Could this suggest underlying histamine-related issues manifesting across multiple systems rather than in isolation?
Chronic Joint Pain Since Childhood
Since I was eight years old, I’ve endured intense and persistent pain in my joints. Initially, the discomfort was primarily in my knees, characterized by a sharp sensation right beneath the kneecap. As someone on the autism spectrum, I often visualize a strange, soothing thought: the idea of removing my kneecap and using an ice cream scoop to relieve the pressure underneath it. My parents sought help from several medical professionals, all of whom attributed my symptoms to growing pains. I even underwent cancer screenings at the age of nine because doctors felt my level of discomfort was excessive for mere growing pains. At school, I frequently had to wear dual knee braces. When I turned 14, I had a CT scan, but the results were inconclusive; doctors continued to insist it was just growing pains. At 18, I had an X-ray that also revealed nothing abnormal. Now at 20, my joint pain persists and is progressively worsening. My hands now ache in addition to my knees, and on particularly bad days, the pain radiates down to my ankles, making walking and sleeping almost impossible for half the week. The discomfort has entirely hindered my ability to work. My family and I strongly suspect that I may have some form of arthritis, but I struggle to convince the medical community of this due to my young age. My father, who suffers from arthritis himself, often empathizes when I express my pain, telling me, "that sounds familiar." I have broken down in front of numerous doctors, pleading for assistance, yet I consistently leave without answers, only to be scheduled for more scans that come back normal. The medical care I have received thus far has been far from satisfactory; for instance, I was prescribed eye drops that nearly resulted in serious damage to my vision when I consulted an eye specialist. This is just one of many frustrating experiences I’ve faced. I feel completely overwhelmed and in agony, and I have no way to reach out for specialized medical help since my only means of transportation is my father, who is also afflicted by arthritis. I feel lost and in deep pain without a clear path forward.
Seeking Guidance on Persistent Chest Discomfort After Extensive Testing
I'm a 43-year-old male, standing at 5'11" and weighing 180 pounds. My journey began around March to April of 2025 when, despite regularly hitting the gym four times a week, I was struck by severe chest pain along with frequent belching and a tight feeling in my diaphragm. At times, the pain became so intense that I feared it might be a heart attack. **Medical History:** In May 2019, I received a diagnosis of **PVS** and have since been under the care of a cardiac electrophysiologist. Upon experiencing these new symptoms, I consulted my EP, who conducted an EKG right then and set me up with a 7-day heart monitor. The results showed no irregularities. Subsequently, I was directed to a cardiologist, who carried out both a **stress test** and an **echocardiogram**, both of which yielded normal findings. Afterward, I returned to my primary care physician, who speculated that my gallbladder might be involved. An **ultrasound** was performed but revealed no issues. I then requested a **chest X-ray**, which also came back normal. My PCP then considered the possibility of a **hiatal hernia** and referred me to a gastroenterologist; unfortunately, that appointment took almost **five months** to materialize. In the meantime, my symptoms persisted, prompting me to cease weightlifting and switch my focus to **cardio and running**. Surprisingly, these activities didn’t exacerbate my symptoms, though the chest pain remained constant. When I finally saw the gastroenterologist, they suggested an **upper endoscopy**, which took another roughly three months to arrange. During this procedure, I was diagnosed with **Eosinophilic Esophagitis (EOE)**, a condition I had not previously experienced. The doctors also placed a pH monitoring device for acid reflux assessment, which indicated **no unusual acid exposure**. Following this, I began a treatment plan that included a swallowed steroid inhaler and an increased dosage of **omeprazole**. Sixty days later, I underwent another endoscopy, which showed that the EOE had largely resolved, with minimal residual symptoms. Unfortunately, my chest discomfort persisted without any improvement. It has now been about **a year** since these issues emerged, and I still have not found substantial relief. A recent chest MRI completed at a dedicated imaging center revealed no abnormalities. I entertained the idea of **costochondritis**, but again, the MRI did not support that hypothesis. The only minor relief I find comes from consciously pulling my shoulders back and expanding my chest. I continue to experience discomfort around my **diaphragm** and tenderness in the area of the **xiphoid process**. My PCP prescribed a steroid pack, which was somewhat beneficial for the pain but failed to alleviate the pressure or constant discomfort. At this juncture, I feel quite lost and uncertain about my next steps. I would greatly appreciate any insights or experiences from others who have faced similar issues. Additionally, if there are any physicians here willing to offer advice, I am open to traveling to find the answers or relief I'm desperately seeking.