Navigating Autoimmune Challenges
I am a 23-year-old diagnosed with Crohn’s disease and currently taking a variety of medications, including famotidine, four doses of Zyrtec daily, montelukast, vitamin D (2000 IU), B12, iron, fish oil, zofran as needed, hydroxyzine as needed, undergo entyvio infusions, as well as pantoprazole (two doses) and Tylenol. Despite numerous consultations across different specialties, I've hit a wall and am in need of guidance. My symptoms include: a butterfly-shaped rash on my face, hair thinning, mouth ulcers, sensations of numbness and tingling, painful and swollen joints, moderate muscle weakness, twitching muscles, bouts of full arm spasms that can last for about an hour, livedo reticularis, persistent severe hives lasting several days, small red spots on my abdomen, petechiae, blood occasionally in my urine, bladder discomfort, Raynaud's phenomenon, episodes of tachycardia (with a peak heart rate of 190 while at rest), issues with memory, episodes of dizziness, vision problems, ear pain, tinnitus, clay-colored stools that float, frequent headaches, widespread body aches, spots on my scalp resembling sores without any visible lesions, sensitivity and swelling around the eyes, intermittent fevers, painful and swollen lymph nodes, ongoing breathlessness, and moderate to severe back pain that feels sharp, often leading to locking up, making any movement unbearable. I also experienced a severe reaction to a tetanus shot, which included full-body flushing, burning sensations, and hives. All of these symptoms began following a facial drooping incident that my family initially thought was a stroke. This episode was accompanied by high blood pressure, which spiked into the upper 160s. Following this, my hives and other symptoms worsened significantly. Additionally, I experienced what I believe to be a large clump of uterine tissue passing during urination last week, although I am uncertain about any potential links to my current condition. My primary care physician suspects lupus based on visual assessments, but a rheumatologist suggested it may simply be an atypical manifestation of my Crohn’s. Another rheumatologist mentioned hypermobility, which the first specialist contested. It seems as if they are trying to connect everything back to Crohn’s instead of exploring other possibilities. Their notes referenced potential primary Raynaud's and possibly leukocytoclastic vasculitis associated with Crohn's; however, it does not appear to match my symptoms accurately. I am seeking an external perspective on this issue. Most of my lab results have returned normal, although my CRP levels consistently show mild elevation. The autoimmune panel did not reveal any abnormalities, and while I had an ANCA test done, I’ve been informed that its results are not particularly significant.
Answers (1)
6/25/2025, 2:31:24 AM
OpenHealth AI
It sounds like you're facing a complex situation with multiple symptoms, and I want to acknowledge how challenging and frustrating that must be for you. While Crohn’s disease can indeed present a variety of symptoms and complications, the breadth of your symptoms suggests a need for further exploration. Here’s a clear approach to help you navigate this effectively:
Main Points
- Systematic Evaluation: Given the range of your symptoms and conflicting opinions from specialists, it's important to pursue a thorough evaluation to rule out or confirm other conditions.
- Symptom Management: Focus on addressing your most distressing symptoms while continuing to monitor changes closely.
- Documentation: Keep a detailed symptom diary to share with your healthcare team.
Explanation
Your constellation of symptoms—including the rash, joint issues, neurological symptoms (like numbness and dizziness), and gastrointestinal concerns—could suggest the possibility of an autoimmune disorder, such as lupus, particularly given your physician's suspicions. It’s not uncommon for autoimmune conditions to overlap, especially in a patient with an existing condition like Crohn’s disease. Commonly, autoimmune diseases can present with multi-system involvement, so thorough evaluation is warranted.
Next Steps
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Seek a Comprehensive Autoimmune Panel: Consider a follow-up appointment with a rheumatologist who specializes in overlapping autoimmune conditions. Request a comprehensive autoimmune panel to look for specific antibodies related to lupus and other conditions. Consider tests like anti-dsDNA, anti-Smith, and anti-ENA panels.
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Neurological Evaluation: Since you have neurological symptoms (e.g., numbness, dizziness, and occasional memory issues), an appointment with a neurologist may be beneficial. They can conduct imaging or additional tests (like an MRI or nerve conduction studies) to assess for any neurological involvement.
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Symptom Diary: Start a symptom diary detailing the onset, duration, and severity of each symptom, and any potential triggers. Note how they impact daily activities. This can provide valuable insights for your doctors.
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Manage Hives and Skin Symptoms: For persistent hives and skin rashes, ensure you are communicating with a dermatologist who can investigate further into the potential causes, including medication reactions or other dermatological issues.
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Evaluate Medications: Review your current medications with a pharmacist or your physician to assess for possible interactions or adverse effects contributing to your symptoms, especially since you are on a complex medication regimen.
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Prioritize Symptoms in Discussion with Healthcare Providers: When meeting with healthcare professionals, explicitly express your concerns about the breadth of your symptoms and how they affect your quality of life.
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Lifestyle Adjustments: Stay hydrated, eat a balanced diet rich in iron and vitamin sources, engage in gentle, low-impact exercises if feasible, and prioritize stress management techniques like mindfulness and relaxation exercises.
Taking these steps should help lead to a more comprehensive understanding of your health issues. You’re doing an important job in advocating for your health; continue seeking clarity and assertiveness in your medical care. Please keep me updated on your journey, and feel free to reach out if you have further questions or concerns.
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