OpenHealth Q&A

Assessing My Health Concerns

I'm reaching out to share my experiences and obtain some guidance (30 years old, female). Lately, I've been feeling quite unwell, as if my body is seriously struggling. This has left me increasingly anxious about my health. About three weeks ago, I began experiencing a sporadic drop in temperature and a change in color in my right hand, along with mild discomfort in my chest, difficulty breathing, and a noticeable pulsation beneath my right collarbone. I underwent a Doppler ultrasound, which analyzed my right arm and neck, as well as a chest x-ray, all of which appeared normal. My general practitioner advised me to keep track of my symptoms; however, after a week, the situation worsened considerably. The discomfort in my chest and breathing issues significantly escalated, to the extent that I struggled to walk around my neighborhood without feeling out of breath. Even standing would induce severe dizziness. Additionally, I started experiencing intense pain in my ribs, which did not improve with anti-inflammatory medications, and my voice became notably hoarse. Upon revisiting my GP, she acknowledged my worsening condition and noted during the examination that my heartbeat was irregular, showing a pulse rate of 62 with frequent skipped beats and a low-pitched murmur radiating to my carotid arteries, which increased to 82 with a normal rhythm. My GP expressed concern about the possibility of a subclavian aneurysm. As a result, I was referred to the emergency room. There, blood tests indicated elevated counts of white blood cells and neutrophils, raised D-dimer levels, but normal troponin levels. They performed a pulmonary CT angiogram that revealed no signs of a pulmonary embolism but did identify some scattered nodules in my right lung and soft tissue that was suggested to be leftover thymus tissue. The report mentioned difficulties in imaging and interpretation. I was given a referral to a cardiologist (still pending) and completed a three-day course of azithromycin to rule out walking pneumonia. A week later, my symptoms continued to deteriorate. I became extremely fatigued and noticed slight swelling on the right side of my neck, and I suspect my spleen and liver might also be enlarged. My voice has remained hoarse, and I have the sensation of pressure in my throat and upper chest. Additionally, I've been experiencing significant itching. My GP was unavailable, prompting me to visit a walk-in clinic for blood tests in an effort to identify potential causes for my symptoms. Previously, my autoimmune panel returned negative results, although I had not tested my ACE levels to rule out sarcoidosis. The most recent bloodwork showed a negative ACE test, white blood cell levels normalizing, and TSH within standard ranges, yet I had elevated C-reactive protein levels. I have a scheduled CT scan of my head and neck, a Holter monitor, and an echocardiogram within the next month, but I'm wondering if I should ask my GP to investigate mediastinal lymphoma or something similar as a possible differential diagnosis. These symptoms have left me feeling quite alarmed, and the journey to diagnosis and treatment in my country can be extremely prolonged (ranging from 6 to 18 months), even when considered urgent (2 to 6 months). Any advice or insights on how to advocate for myself effectively during this process would be incredibly helpful.

Answers (1)

3/30/2025, 8:30:53 PM

OpenHealth AI

I'm sorry to hear that you're experiencing such concerning health issues. It's understandable to feel alarmed given the various symptoms you've outlined, and it's good that you're actively seeking answers.

Summary of Key Points

Your symptoms, testing history, and ongoing concerns, including the recent irregular heartbeat and elevated C-reactive protein levels, warrant close follow-up and proactive management. Given the complexity of your condition, it is important to advocate for comprehensive evaluation while managing your anxiety about the diagnostic process.

Explanation

1. Symptoms: You described a range of symptoms including chest discomfort, breathing difficulties, dizziness, hoarseness, and potential swelling, along with concerning test results.
2. Investigations: Your recent tests have ruled out significant conditions but have also revealed some abnormalities that need further exploration. The presence of scattered nodules and elevated inflammation markers like C-reactive protein can indicate underlying issues.
3. Potential Conditions: While you mentioned concerns about mediastinal lymphoma, numerous conditions could present similarly, including infections, inflammatory disease, or other neoplasms. It's critical to remain open to various possibilities while narrowing down the diagnosis through tests.

Next Steps

1. Keep Detailed Records: Document all your symptoms daily, noting their severity, frequency, and any triggers. This information will be invaluable in discussions with your healthcare providers.

2. Communicate Clearly with Your Providers: When you visit your GP or specialists, bring along your symptom diary and test results. Clearly express your concerns about specific conditions (like lymphoma) and ask for their thoughts. It's important to share any new or worsening symptoms.

3. Request Follow-Ups on Abnormal Results: Since your CT scan and echocardiogram are scheduled, ask for clarity on how these results will influence potential next steps. If there's significant waiting time, consider asking about expediting tests due to symptom severity.

4. Explore Self-Advocacy Techniques:

   • Educate Yourself: Understand potential conditions related to your symptoms, which can help empower you in discussions with healthcare providers.
   • Seek Support: Consider connecting with support groups or someone who has experienced similar health issues. Emotional support can also help reduce anxiety.

5. Manage Symptoms: In the meantime, focus on self-care techniques that could alleviate some symptoms:

   • Hydration & Nutrition: Maintain a balanced diet and stay well-hydrated to support your body.
   • Rest & Activity Balance: Try to rest adequately while feeling well enough to engage in light activities as tolerated.

6. Prepare Questions for Your Specialists: Write down questions you want to ask each doctor, particularly about your symptoms, treatment options, and any further diagnostic steps. Being prepared can promote a more engaged dialogue during appointments.

Advocating for yourself in a complex healthcare system can be challenging, but by staying organized and informed, you'll be better equipped to navigate this process. Don't hesitate to reach out for further support or clarification on specific aspects as you continue this journey.