OpenHealth Q&A

Essential Questions for Neurology and Rheumatology Consultations: Understanding My Health Challenges

**Greetings!** I hope it's acceptable for me to express my situation here. I'm seeking perspectives or advice from individuals who have faced similar health challenges, or from healthcare professionals who could provide insight. My medical journey has been complex, involving various specialist teams, and I’m still trying to make sense of it all. I have several upcoming consultations, including neurology, neuro-ophthalmology, and a potential orbital decompression surgery consultation within plastic surgery, as well as a hysterectomy appointment scheduled for August 12. Here’s a timeline reflecting my symptoms and medical history thus far. The concurrent nature of my symptoms has led to considerable confusion. What kind of inquiries should I pose during these visits? I appreciate your time in reading this, and I’m grateful for any advice or support you can give. **Demographics:** **Age:** 37 **Gender:** Female **Medical Diagnoses:** - Raynaud’s phenomenon - Left-sided cerebral palsy - Polycystic ovary syndrome (PCOS) - Meniere’s disease (pertaining to left vestibular dysfunction) - Asthma - Previous uveitis (diagnosed in 2022) - History of recurrent miscarriages - Pernicious anemia (previously diagnosed) - Past instances of chemical pneumonitis (treated with steroids) **Medications Currently Taken:** - Vitamin D - Ritalin - Zepbound 7.5 - Recently concluded a 60mg prednisone taper # Timeline of Symptoms and Events: **Early April 2025:** - **Severe and persistent headache onset**: - Lasted approximately 11 days, characterized by intense pressure, light sensitivity, and vestibular disturbances (including dizziness and loss of balance). - First-line treatments were ineffective; a migraine cocktail provided relief for only a few hours. It appears that I’m now more susceptible to headaches. **April 7–11, 2025:** - **Abrupt vision alterations**: - Appearance of black spots in vision and blurred areas. - **Intense ocular symptoms**: - Swelling of eyelids and eyeballs, increased redness, and significant eye pressure. - Persistent light sensitivity. - Bilateral eyelid drooping, more pronounced on the right side. **Mid-April 2025:** - **First visit to the emergency room** due to headache and vestibular issues. - **Second ER visit** shortly after for **sudden pitting edema** on the left side of my body and abdomen: - Heart failure was ruled out; no infections detected. **Late April to Early May 2025:** - Edema spread to **hands and both extremities**. - Emergence of new **neurological symptoms**: - Tingling sensations in face, arms, legs, and feet. - Loss of strength in arms and legs. - Burning feelings in extremities. - Experience of **intense deep musculoskeletal pain** affecting my back, hips, feet, arms, and shoulders. - Initiated a **heavy menstrual period** lasting 17 to 19 days alongside my significant flare-up. **May 2025 and Beyond:** - **Progression of swan-neck deformities** in my left hand. - Ongoing confirmation of **Raynaud’s phenomenon** during examination. - Worsening eye swelling; rheumatologist designated urgent referral to the hospital due to concerns over rapidly deteriorating condition in the right eye, although eye pressure remains at normal levels. **Current Specialist Team:** - Engaged with professionals in neurology, neuro-ophthalmology, rheumatology, plastics, and obstetrics/gynecology. **Imaging Results:** - **CT scan of the abdomen** confirmed the presence of edema and an enlarged uterus, with no ascites observed. An MRI is scheduled for July 10. **Laboratory Results:** |**Test**|**Result**| |:-|:-| |**ESR**|32 (elevated)| |**CRP**|0.7 (mildly elevated)| |**ANA (IFA)**|Negative| |**SSA/SSB**|Negative| |**RF & CCP**|Negative| |**HLA-B27**|Negative| |**Beta-2-GPI, ACL**|Normal| |**PTT-LA**|Elevated screening, subsequent tests negative|

Answers (1)

7/5/2025, 3:10:50 PM

OpenHealth AI

Thank you for sharing your comprehensive medical history and symptoms. It’s understandable to feel overwhelmed with such a complex set of challenges, and you are taking a proactive step by preparing for your upcoming consultations. Here’s how you can approach your visits with specialists in neurology, neuro-ophthalmology, and rheumatology.

Key Areas to Address During Consultations:

1. Clarification of Symptoms: Given the range of symptoms and their progression, it’s crucial to communicate how each symptom has developed over time and its impact on your daily life.

2. Understanding Potential Connections: With multiple conditions (e.g., Raynaud’s phenomenon, previous uveitis, and Meniere’s disease), discuss with your healthcare team how they might be interrelated. This can help in forming a comprehensive treatment plan.

3. Treatment Goals: Clearly express what you hope to achieve from each consultation. Whether it's pain relief, managing headaches, or addressing fatigue, setting clear expectations can guide your discussions.

Essential Questions to Consider:

• For Neurology:

  • What might be causing my recent neurological symptoms, including the tingling and loss of strength?
  • How can we manage my headaches more effectively, given their persistence and diminishing response to standard treatments?
  • Are there any diagnostic tests or imaging that could further clarify my symptoms?

• For Neuro-Ophthalmology:

  • What could be causing my vision changes and ocular swelling?
  • Given my history of uveitis, how can we prevent deterioration in my eye health?
  • Are there specific treatments or interventions for my bilateral eyelid drooping?

• For Rheumatology:

  • How can my current treatment for Raynaud’s phenomenon be optimized, especially in light of my recent edema and joint changes?
  • What does my elevated ESR and CRP suggest about my underlying conditions?
  • Are there additional autoimmune conditions we should consider based on my symptoms and test results?

Actionable Steps for Preparation:

1. Document Symptoms: Keep a symptom diary leading up to your appointments. Note when symptoms occur, their severity, and any factors that improve or worsen them. This can be a valuable tool for your doctors.

2. List Your Medications: Bring a list of all medications, including dosages and when you started each. This helps the specialists understand your treatment background.

3. Prepare for Each Visit: Write down your most pressing questions in advance and prioritize them. This ensures you cover what's most important to you during the limited time of a consultation.

4. Support System: If possible, bring someone with you to appointments. They can help remember what was discussed and provide emotional support.

5. Follow-up Plans: Ask about the next steps after your consultations, whether it involves further tests, follow-up appointments, or referrals to other specialists.

Conclusion:

Your health journey is complex, but by preparing for each consultation and actively participating in your care, you can take steps toward finding relief and clarity. Remember, it’s important to advocate for yourself and communicate openly with your healthcare team. You're not alone in this, and it's beneficial to seek out support from professionals and loved ones alike. If you have further questions or need more guidance, feel free to reach out.