Seeking Guidance on Health Issues
Greetings! A friend suggested that I turn to Reddit for assistance in gathering suggestions or information. This marks my debut on this platform, and I'm grateful for any insights that can be shared. After spending another three days in the hospital and returning home yesterday without a clear diagnosis for the inflammatory episode I've recently endured, I'm eager to gain some understanding of my condition and to explore recommendations for specialists or further testing. Since approximately 2014, I have experienced an elevated white blood cell count, with an accompanying rise in my platelet count arising around four years later. I’ve consulted with a hematologist on two occasions and undergone extensive blood tests and evaluations, yet have not received any definitive answers. The only information I've been given is that my body functions as if it lacks a spleen. Alongside these blood abnormalities, I've been grappling with frequent urinary tract, bladder, and kidney infections, accompanied by numerous kidney stones and the constant presence of them within my system. These infections have frequently escalated into more severe abdominal infections affecting my uterus, fallopian tubes, ovaries, and on one occasion, my appendix, leading to two episodes of sepsis in the last few years. My body also seems susceptible to various inflammatory conditions and infections. I have battled cellulitis multiple times, which have independently resulted in hospital stays. Additionally, I dealt with a severe dental abscess that necessitated a week-long hospitalization with intensive IV antibiotics; during that time, I developed a smaller dental abscess that required surgical drainage. Over the past six to seven years, I’ve faced issues related to my joints and muscles, characterized by swelling, inflammation, and intense burning sensations that can extend from my shoulders down to my fingertips, as well as sporadic numbness mainly affecting the outer areas of my thighs. This has been coupled with incapacitating fatigue, to the point where it seems as if my head and limbs are each burdened with extreme weight. In the last two and a half years, I've experienced several episodes of acute inflammation that left me immobile, with one particularly severe incident resulting in a CRP level of 296 and a week-long hospitalization where I was termed a medical mystery after undergoing comprehensive testing and imaging. This type of inflammatory flare, though milder, was also the reason for my most recent hospitalization. I went to bed feeling fine, only to awaken feeling quite ill. The only treatments that have proved effective during these inflammatory episodes have been steroids administered intravenously, via injection, or orally. I also contend with diabetes and COPD, and I have been a long-time smoker. However, I have had periods during these years of managing my health where I lost over 100 pounds, quit smoking, and engaged in various forms of physical activity. Unfortunately, none of these lifestyle changes have impacted the underlying issues I face; they continue regardless of my weight, diet, blood sugar levels, or smoking status. In summary, I am left wondering: why does my body seem to be in such turmoil? If anyone has suggestions for specialists, testing procedures, imaging, or bloodwork that might shed light on my situation, I'd appreciate your input. Thank you all for your assistance and guidance! I have also shared this on r/DiagnoseMe.
Answers (1)
7/14/2025, 4:01:49 AM
OpenHealth AI
Thank you for sharing your extensive health journey. It's understandable to feel overwhelmed by the complexity of your symptoms and the lack of a clear diagnosis. Your body’s response, as described, suggests a significant inflammatory component, especially with the high CRP levels you've reported and the persistent infections and inflammatory episodes.
Key Concerns:
- Chronic Inflammation and High White Blood Cell Count: This may indicate an autoimmune condition or an underlying hematological disorder.
- Frequent Infections: Your history of recurrent urinary, bladder, and other infections points to a potential immune system issue or an anatomical abnormality.
- Joint and Muscle Symptoms: These could be part of an inflammatory or autoimmune disorder.
- Fatigue and Severe Symptoms: Such debilitating fatigue and flare-ups warrant thorough investigation.
Next Steps:
-
Follow-Up with a Rheumatologist: Since your symptoms seem to have an autoimmune aspect, a rheumatologist can evaluate for conditions like lupus, rheumatoid arthritis, or other systemic autoimmune diseases. Given your symptom profile, they might pursue specific tests, such as:
- Antinuclear antibody (ANA) test
- Rheumatoid factor (RF) and anti-citrullinated protein antibodies (anti-CCP)
- Specific genetic markers related to autoimmune diseases.
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Immunological Testing: Considering your recurrent infections, it's essential to assess your immune function. Tests may include:
- Immunoglobulin levels (IgG, IgA, IgM)
- Specific antibody responses to vaccines
- Complement levels (C3, C4)
-
Hematology Consultation: Since you've been advised that your body functions as if it lacks a spleen, further discussions with a hematologist about possible underlying causes for your blood abnormalities and potential spleen function evaluations may provide insights.
-
Consider Genetic Testing: In some cases, underlying genetic disorders that affect immune function may need to be explored.
-
Lifestyle Modifications: Although previous lifestyle changes haven't resolved your issues entirely, maintaining a healthy diet and regular physical activity can help improve overall health. Consider:
- Seeking support from a registered dietitian with experience in managing chronic conditions.
- Stress management techniques, such as mindfulness or gentle exercise (like yoga), which may help with symptom management.
Additional Actions:
- Symptom Diary: Keeping a detailed record of your symptoms, triggers, and changes can assist healthcare providers in identifying patterns or correlations and guide diagnosis and treatment.
- Emergency Plan: Given your history of sepsis and severe infections, consider having a clear action plan for identifying and responding to severe symptoms promptly.
Conclusion:
Your healthcare journey may be complex, but staying proactive and connected with the right specialists will be beneficial. Gathering your medical history, test results, and symptoms clearly for your next appointments will also help in advocating for your health. Remember to seek support from your loved ones or patient support groups, as shared experiences can be incredibly comforting. Wishing you strength and clarity on your path forward!
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