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
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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.
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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
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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.
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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.
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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.
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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.
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