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:
-
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.
-
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.
-
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:
-
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.
-
List Your Medications: Bring a list of all medications, including dosages and when you started each. This helps the specialists understand your treatment background.
-
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.
-
Support System: If possible, bring someone with you to appointments. They can help remember what was discussed and provide emotional support.
-
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.
Related Questions
Concerns About Persistent Cough: Is It Cardiac Related?
Greetings everyone, I’m a 20-year-old male weighing 320 pounds, which qualifies as overweight. Having dealt with asthma for the majority of my life—although it’s generally mild—I typically rely on a nebulizer during occasions of typical chest colds. For some context, I came down with a cold around January 9th. Being on a college campus frequently means exposure to a variety of illnesses, and I suspect I contracted bronchitis, given the lasting cough and breathlessness I experienced for a couple of weeks afterward. However, I believed I had fully recuperated and moved on. Recently, since about Monday, I have noticed a return of my breathlessness along with a persistent cough and a sensation of fluid in my chest and throat. I find myself coughing as I attempt to clear my throat. This comes and goes, but it tends to intensify in the mornings right after I wake up and at night when I try to sleep. Additionally, I spend time with friends who smoke on occasion, and I initially thought that secondhand smoke might be a contributing factor. My concern has grown, and I’m unsure what to think. So, I’m reaching out for guidance: could this be residual effects from my cold in January, or should I be concerned that this might indicate a more serious issue related to my heart?
Hernia Diagnosis Without Follow-Up: A Conflicting Situation
A 22-year-old male recently visited the emergency room due to discomfort in his lower abdomen. Upon examination, the medical team was indecisive about whether he was experiencing an oblique muscle problem or a hernia. Surprisingly, they opted against performing a CT scan or ultrasound and did not schedule any follow-up appointments. To the best of my knowledge, hernias typically do not resolve themselves with merely the use of ace bandages or over-the-counter pain medication; surgical intervention is usually necessary for proper treatment. Is there a specific rationale behind their reluctance to pursue further diagnostic testing or surgery?
Experiencing Wheezing During Deep Breaths
Greetings, everyone! I'm seeking your insights on a particular issue I'm facing: I experience a wheezing sound only when inhaling deeply. Interestingly, it's noticeable on one side, and it's audible to others as well. I've never used tobacco or any other substances, nor do I consume alcohol. My weight falls within a healthy range, and I do not have asthma. Additionally, my oxygen levels are normal, and I don’t struggle with breathing; this situation is more of an irritation than a serious problem. I’ve recorded the noise, but I’m unable to share it here; it honestly resembles the sound of a rubber chicken. I would appreciate any thoughts or suggestions! Thank you in advance!
Unexplained Episodes of Abdominal Discomfort
Age: 28 Gender: Female Weight: 194 lbs Height: 5’7" Current Medications: Vitamin D, Fish Oil, B Complex Vitamins, Birth Control Pills, Vyvanse 30 mg Health Background: Asthma, Eczema, Gastroesophageal Reflux Disease (GERD) Since August 2025, I've experienced three occurrences of intense abdominal discomfort that necessitated visits to the emergency room for pain management. These episodes usually strike at night, escalating to unbearable levels within around 30 minutes. None of the sitting positions seem to provide relief, and gastrointestinal medications have proven largely ineffective. Only strong pain relievers seem to alleviate the suffering. After the peak of the pain subsides, my abdomen remains sensitive for more than three days. I can accurately identify the location of the discomfort, which appears to be between the midepigastric area and near the gallbladder. The pain is difficult to articulate, yet it presents as a severe burning and aching sensation. Interestingly, there does not seem to be any specific food intake related to these pain episodes. I underwent an H. Pylori breath test that returned negative results. Additionally, I had an esophagogastroduodenoscopy (EGD). Although the biopsies were also negative for H. Pylori, they did reveal residual liquid in my stomach and a small section of intestinal metaplasia. My complete blood count (CBC) and comprehensive metabolic panel (CMP) results were normal, except for elevated LDL levels, which I’m already aware of. My gastroenterologist has recommended a gastric emptying study (GES) to evaluate the functionality of my stomach. If results indicate no issues, we will then investigate the gallbladder. Are there alternative explanations for my symptoms? Should I be worried about autoimmune metaplastic atrophic gastritis (AMAG)? While I have been diagnosed with GERD, this pain feels distinctly different from the GERD-related discomfort. I am not entirely sure it is gastroparesis, even though I occasionally regurgitate if I eat too quickly; I do not experience nausea or malnutrition. I have researched extensively, and my symptoms align with biliary colic. However, I am anxious about the possibility of gallstones not appearing in the ultrasound. My gastroenterologist is not particularly concerned about the intestinal metaplasia, but being only 28 years old, I find this worrying. As a medical student, these painful episodes significantly hinder my studies and academic progress.
What Could This Bump Be? Should I Be Concerned?
I’m a 22-year-old male, standing at 6 feet 2 inches tall and weighing 180 pounds. I currently don’t take any medications and have no significant medical history. Recently, I discovered two small, white bumps on my finger, which appeared around two days ago. They feel firm, much like the sensation of a splinter lodged underneath the skin, and they stick out slightly above the surface. One bump is located at the joint of one finger, while the other is positioned at the tip of another finger on my opposite hand. These bumps are neither painful nor bothersome, but I’m curious to know whether I should consider having them removed or if they might resolve on their own over time. I would appreciate any guidance regarding this matter. Thank you!