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
Strange Jelly-Like Substance Observed from Wound
I’m a 21-year-old female living with an auto-inflammatory condition known as hidradenitis suppurativa (HS). Recently, I've experienced a concerning issue with one of my wounds. This particular wound causes significant pain and excessive bleeding. However, whenever I attend to it, I tend to find this unusual jelly-like substance present within it. Interestingly, this phenomenon has only occurred with this one wound and not any of the others I have. The bleeding seems to persist until I manage to remove this jelly substance, after which it typically slows down and comes to a halt completely. I’m seeking insights into what this might signify so that I can effectively discuss it with my healthcare provider.
Battling Chronic Nausea and Vomiting for Over Two Years
For the past two years, I (age 26, female) have been enduring an incredibly challenging health situation. I experience intense nausea daily and find myself vomiting numerous times, with almost nothing providing relief. To provide some background, I’m from West Texas and I currently weigh around 190 pounds, standing at 5’7”. Initially, my weight was about 211 pounds when these symptoms began, and it fluctuates frequently between 190 and 225 pounds. I engage in vaping and consume THC. Previously diagnosed with hypothyroidism, my condition seemingly resolved, according to my healthcare providers. Additionally, I have polycystic ovarian syndrome (PCOS). I have consistently faced irregular bowel movements, with stools that are loose and sometimes appear to have mucus. Compounding my struggles, I've also suffered from migraines. I have had an IUD for over five years, experiencing two insertions of the Kyleena device. In December 2022, my battle with health took a severe turn when I was diagnosed with stage 4 Hodgkin’s Lymphoma, requiring chemotherapy treatment, specifically AVBD (Apologies for not recalling the exact medication names). By July 2023, I had fortunately achieved remission. However, after reaching remission, my vomiting worsened, transforming from primarily white foam to a mixture of 80% bile, any food I attempt to consume, and still white foam. This intense vomiting, accompanied by significant pain in my upper back, escalated to more than eight episodes daily by November 2023. At that time, THC seemed to be the only avenue for me to retain any food. During this tumultuous period, I consulted various doctors who, after confirming I wasn’t pregnant, attributed my symptoms to Cannabinoid Hyperemesis Syndrome (CHS). Immediately, I ceased THC consumption for over six months, yet the vomiting continued unabated. Each time, doctors would prescribe ondansetron, regardless of my claims that it provided no relief. I experimented with various diets recommended by medical professionals, but there were no improvements in my condition. Eventually, I obtained a referral to a gastroenterologist who intended to perform an endoscopy. However, the procedure was prohibitively expensive even with insurance, and thus was never conducted. This doctor also ordered blood tests to rule out several gastrointestinal disorders, such as Crohn's disease, Irritable Bowel Syndrome (IBS), and gluten sensitivity, but all results came back normal. Afterward, I had another appointment with a different gastroenterologist, but the doctor failed to meet with me. Instead, a nurse informed me that the doctor had merely recommended promethazine without conducting any tests or scheduling further visits. When I mentioned the possibility of gallbladder issues, the doctor laughed dismissively at my suggestion. Discussing my situation with my oncologist, he suggested that my heightened sensitivity to food odors stemmed from my chemotherapy experiences while I was working in fast food. While food smells indeed affect me, I'm primarily triggered by medical scents such as rubbing alcohol and cleaning agents. This ongoing ordeal has been overwhelmingly distressing. I now experience episodes of vomiting accompanied by bright red blood, presumably due to a throat tear. When I first encountered this troubling symptom, I consulted a doctor who appeared unfazed and prescribed a promethazine suppository, which does help but makes me extremely drowsy. My nausea persists nearly around the clock, often feeling as if there’s a heaviness in the upper part of my abdomen. I frequent urgent care facilities when my symptoms intensify, only to be met with minimal assistance since this is a chronic issue. Currently, I lack a primary care physician. Whenever I sought one, I encountered skepticism regarding my condition, with some healthcare professionals implying that I was exaggerating my symptoms. Though many physicians who do take my situation seriously seem baffled, I've lost count of the diverse medical experts I've consulted about these ongoing issues. If anyone has insight or suggestions, I would genuinely appreciate it. I can share my latest bloodwork results if that would be helpful—just let me know!
Strange Stomach Sensation Leading to Waking Up
Greetings. I'm a 36-year-old male, standing at 172 centimeters and weighing 90 kilograms. I don't take any medications, nor do I smoke. I've been living with diastasis recti for several years now, and I may also have irritable bowel syndrome (IBS). Additionally, I deal with fatty liver and kidney stones, though I assume these last two conditions are not related to my current concern. Occasionally, I experience a peculiar sensation that jolts me awake; it feels like a quick pulsing in my stomach. I’ve noticed it tends to affect the left side when I’m lying on my left side and the right side when on my right. Remarkably, it can occur even when I’m on my back. This strange feeling often escalates into a surge that fully rouses me. Alongside this, I sometimes feel prickling sensations throughout my body and fleeting lightheadedness. When this sensation disturbs my sleep while I’m turned to my side, shifting onto my back or the opposite side might alleviate it, but not always. In instances where I awaken while lying on my back, I discovered that gently pressing my hands on either side of my stomach can help, as can rising to a sitting or standing position. However, during my last two episodes—one a couple of weeks ago and another tonight—those techniques weren’t effective right away, which made me feel a bit anxious, prompting me to seek advice. Does anyone have insight into what might be going on? By the way, I’ve undergone routine ultrasound examinations of my abdomen by two different physicians during check-ups, both of whom assured me that everything appears normal, including my abdominal aorta and internal organs. They didn’t identify any issues at that time.
24M | Unexplained Fainting Incident
**Note:** I previously shared this story, but it was inexplicably removed. I’m a 24-year-old male without any medical diagnosis or prescription medications. While I do consume alcohol occasionally, I hadn’t been drinking before this happened. Around 3 a.m., I got up from bed to use the restroom. As soon as I began to urinate, I suddenly felt a wave of dizziness. The next moment I was aware of was regaining consciousness in the bathtub, startled awake by the sensation of something dripping on me—only to discover it was my own blood. This was my first experience with fainting. When I came to, confusion set in. I was disoriented and couldn’t comprehend why I was being dripped on while in what I thought was my “bed.” Strangely, I also imagined that I was lying on a collection of marbles (which I actually don’t own)—this turned out to be the shattered glass of my shower door lying around me. I’m uncertain whether I lost consciousness first and then fell, or if the fall caused my brief blackout. It took me a few moments to understand why I was in the bathroom at all. I’m not sure how long I was out; I only remember it was around 3 in the morning when I initially got up, and about the same time when I regained consciousness. I dialed 911, and the ambulance arrived promptly. They checked my vitals, performed an EKG and measured my blood sugar, finding nothing unusual. At the emergency room, they repeated the vital checks, conducted a CT scan, drew blood, and took x-rays—yet still no abnormalities were detected. I had several cuts on my face and left arm (curiously, this is the arm that would have been turned away from the door), along with bruising around my ribs. Since the incident, I’ve been suffering from headaches and pain in my ribs. I received stitches on both my face and arm. The nurse suggested I could have stronger pain relief, but I opted for just Toradol. They eventually discharged me, stating, "We’re unsure what caused this, but return if it happens again." What might have triggered such an incident? How can I safeguard against it reoccurring if they remain uncertain about the cause?
Swelling Beneath My Chin Near the Jawline
18-Year-Old Male: I'm reaching out to any medical professionals who might provide insights into my situation. I've been using marijuana since I was 14, but now, at 17, I'm making an effort to stop and have been clean for 18 days. Recently, I've discovered an unusual swelling located just beneath my chin, behind my jaw. It causes some discomfort when I move, yet it doesn’t feel painful continuously. I'm somewhat anxious that this could be indicative of a more serious issue, especially considering it's positioned near my chin's lymph nodes. Any advice or information would be greatly appreciated as it might help alleviate my worry.