Struggles with Rheumatology Care
Greetings, everyone. I’m a 21-year-old woman on a journey to receive a proper diagnosis for ACLE, as suggested by my dermatologist. Unfortunately, my rheumatologist has yet to respond, which is essential for making an official diagnosis. I've made numerous attempts to reach out – leaving messages and calling – but it feels like my concerns are falling on deaf ears, leaving me feeling devastated. While my dermatologist opted not to perform a biopsy on my rash, I arrived prepared with bloodwork and photographs of the rash affecting my face during our visit. He indicated that my bloodwork showed multiple concerning indicators along with my symptoms which warranted starting a treatment like Plaquenil. He mentioned that he would prefer to avoid leaving a mark on my face if possible. The relevant findings from my blood tests include a positive ANA at 1:320, positive anti-smooth muscle antibodies at 1:320 while my liver tests remain normal, preventing a liver biopsy to understand the reason behind these antibodies (as they don’t appear without cause). Additionally, I have a positive result for anti-chromatin at 1.5, which my research indicates is quite specific to lupus, and my C3 protein is now bordering on low. Despite all of this, my rheumatologist seems unmotivated to take further action. The symptoms I’m experiencing are overwhelming. I endure chronic pain in my neck and back, along with persistent joint pain that causes discomfort and popping in my joints, including my knees, elbows, fingers, and even my feet. Recently, my blood pressure has surged, reaching a peak of 140/102 over the past two months, which has compelled me to consult a cardiologist regarding the potential for POTS or other cardiac issues. Currently, I'm wearing a Zio heart monitor for a two-week period. I also have Raynaud’s phenomenon and livedo reticularis, both of which are often associated with lupus or other autoimmune conditions. My symptoms include a malar rash on my face, sensitivity to sunlight, and emerging eye pain, particularly in bright light, which forces me to squint frequently. The heat has become intolerable for me, despite having grown up in Tennessee, as I now struggle with excessive sweating, which one doctor attributed to hyperhidrosis. I've been experiencing dizziness and constant fatigue as well. A perplexing issue is that when I accessed my medical records, there was no mention of ACLE, Raynaud’s, or livedo reticularis, among other symptoms. Why is this happening? My rheumatologist seems to have completely disconnected from our communication. I understand that she has multiple patients, yet it has been a month without even a brief acknowledgment. I feel completely lost and can hardly handle a full 40-hour work week; I genuinely need medication or assistance. What options are available when you feel overlooked by healthcare professionals?
Answers (1)
6/19/2025, 2:40:52 PM
OpenHealth AI
I'm really sorry to hear about your struggles with obtaining the care and response you need. It sounds incredibly frustrating and disheartening to feel overlooked during such a challenging time. You have already taken many proactive steps by gathering your medical records and seeking consultations from different specialists. Let’s focus on some actions you can take moving forward.
Main Points:
- Continue advocating for yourself while seeking clarity and support in your care.
- Document your symptoms and communication efforts to present to your health professionals.
- Consider alternative ways to pursue your diagnosis and treatment.
Explanation:
It’s vital to feel seen and heard in your healthcare journey, particularly with complex conditions like autoimmune diseases where a coordinated approach is essential. The concerns you have, including positive autoantibody tests and related symptoms, should not be minimized. The fatigue, joint pain, and severe symptoms you describe could significantly impact your quality of life and warrant a more responsive approach from your rheumatologist.
The lack of communication from your rheumatologist is indeed frustrating. These specialists can be overwhelmed, but you deserve clarity about your diagnosis and treatment options. It’s common for such individuals to have many patients; however, timely responses are crucial in cases of potential autoimmune conditions.
Next Steps:
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Follow-Up Communication:
- Draft a detailed email or letter summarizing your symptoms, test results, and concerns. Clearly express how you feel overlooked and request specific updates regarding your treatment plan or diagnosis. Consider asking for a brief phone call to discuss your case directly.
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Document Everything:
- Maintain a symptom diary that includes daily logs of your pain levels, fatigue, any rashes, and other relevant symptoms. Include details of your interactions with your healthcare providers. This will be useful for future consultations and help provide a clearer picture of your overall health.
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Engage Your Primary Care Physician (PCP):
- If communication with your rheumatologist continues to falter, reach out to your primary care physician. They can often help advocate on your behalf, provide continuity of care, and coordinate among specialists.
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Consider Seeking a Second Opinion:
- If you feel that your concerns are not being adequately addressed, it may be worthwhile to seek a second opinion from another rheumatologist. New perspectives can often bring valuable insights and alternative treatment options.
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Support Groups & Resources:
- Connecting with autoimmune disease support groups, either locally or online, can provide you with coping strategies, shared experiences, and emotional support. Many people in these groups can relate to your frustrations and can offer helpful advice on navigating the healthcare system.
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Prioritize Symptom Management:
- Focus on symptom relief strategies, such as managing joint pain through gentle exercises, using heat or cold therapy, and considering anti-inflammatory treatments under guidance. Staying hydrated and maintaining balanced nutrition can also help manage fatigue and overall well-being.
Feeling disregarded in your health journey can be traumatic, but with persistence and advocacy, it's possible to find the care you deserve. Keep pushing for clarity and support, and remember that you are not alone in this journey. If you have any questions or need further details about specific strategies, feel free to reach out!
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