Inquiries for Neurologists Regarding Immature Teratomas, Chemotherapy-Induced Neuropathy, and Disease Progression
2023-10-20 F30 - 165 lbs Current Medical Conditions: - UCTD/Borderline SLE (currently in remission) - Psoriasis - ADHD - Ovarian Cancer (1 year in remission) My treatment regimen included four cycles of the BEP chemotherapy regimen. Presently, my medications consist of Metoprolol (25mg administered twice daily) and Lyrica. It's been about one year since I completed my treatment for ovarian cancer. Prior to my diagnosis, there were suspicions of SLE and the possibility of an underlying neurological issue. An earlier nerve biopsy conducted by my previous rheumatologist revealed borderline results, and he also noticed that I lack mobility in my ankles while being hypermobile at my knees. Approximately six months before my cancer diagnosis, I was experiencing symptoms such as increasing weakness, occasional burning sensations in my right hand and arm, as well as episodes of shock-like sensations radiating up my back. Subsequently, I began experiencing episodes of vertigo and became highly sensitive to specific lights that would provoke these dizzy spells, significantly impacting my ability to walk without feeling faint. Following my diagnosis, I conducted some research about my cancer and encountered a case study of a patient exhibiting symptoms akin to mine, who tested positive for the Nmdar antibody and was diagnosed with a paraneoplastic syndrome related to her cancer. I requested both an MRI and an Nmdar antibody test from my oncologist; however, the antibody test returned negative, and the MRI detected an inconsequential small lesion. Notably, in the study, the woman only showed positive antibody results after a spinal tap was performed. Fast forward a year, and I am realizing the reoccurrence of vertigo symptoms, additionally noticing a worsening of my neuropathy primarily on the right side of my body. This leads me to ponder: given that I underwent chemotherapy, would it not have eradicated any antibodies potentially responsible for these symptoms? Could these present issues be indicative of a distinct neurological disorder, or is it typical for chemotherapy-induced neuropathy to evolve in this manner? I recently underwent DNA testing which indicated a high risk for celiac disease, multiple sclerosis, and other autoimmune disorders due to a correlated gene. In the past three months, I experienced several emergency room visits without yielding definitive answers. During one episode, I suffered from severe nausea and projectile vomiting, which led to my dehydration. Although I tested negative for H. pylori, I noticed some improvement by eliminating gluten and subsequently received a gastrointestinal referral. I lost around 15 lbs over the month due to the lasting nausea. Subsequent to this, I faced significant sleep disturbances, only managing 2-3 hours of sleep per night. My circadian rhythm seemed disrupted, causing numerous attempts to regulate it to prove fruitless. A troubling episode occurred while shopping, where my vertigo symptoms resurfaced. I felt sudden heaviness in my lower body as lights began triggering dizziness, complicating my focus. Upon exiting the store, I experienced acute stabbing pains in my right thigh radiating down to my knee and calf. Later that evening, the pain persisted alongside numbness in my right arm for about 15 minutes, which was accompanied by chest pains, prompting another ER visit due to concerns of a clot or other serious conditions. While assessments indicated normal results, I found myself dehydrated once more and saw a mild abnormality in my ECG readings. Just a couple of days later, I faced another alarming episode characterized by a sudden increase in heart rate to 170 bpm as I walked to my car. Despite a stabilization by the time I reached the ER, I nearly fainted during a blood draw. Throughout these visits, one nurse hypothesized iron deficiency anemia, leading me to take iron supplements which positively impacted my sleep and circadian issues. However, stabbing pains persisted, albeit with reduced intensity, and my neurologist switched my medication from Gabapentin to Lyrica, providing some relief, though not completely. My cardiologist has yet to ascertain the cause of my symptoms, and neither has my primary care provider. Currently, my symptoms predominantly affect the right side of my body, which raises questions about whether the previously deemed insignificant left-sided brain lesion might be more clinically relevant than initially thought, given the correlated symptoms. Strenuous walking causes numbness in my right leg, and there have been episodes of tingling sensations or temporary immobility in my right arm. Post-surgery, I had a concerning reaction to Benadryl that involved a dull spinal ache followed by intense thirst, burning sensations, and severe weakness in my legs and chest. The episode rendered me unable to think clearly, lasting around half an hour and resulting in wariness towards Benadryl moving forward. Similarly, morphine elicited a strong negative reaction involving burning sensations, nausea, and dizziness. I've also encountered heart palpitations and tachycardia without a clear diagnosis, and gastrointestinal symptoms linked to gluten have frequently caused fatigue and dizziness. Conditions like diabetes and blood clots have been ruled out. My previous rheumatologist suspected POTS, yet the new cardiologist has not conducted testing. Currently, I am taking Metoprolol, which has effectively managed my blood pressure, tachycardia, and palpitations. An MRI from about a year ago revealed a tiny lesion in a region associated with MS on the left side of my brain, while an EMG suggested CIDP; however, my current neurologist believes that the test was improperly conducted. This EMG coincided with my ovarian cancer diagnosis. Notably, my chemotherapy-induced neuropathy typically ends at my wrists and ankles, yet I’m experiencing different neuropathy predominantly affecting my right side. Recently, I was referred to a Neuro-Ophthalmologist due to a significant decline in my right eye's vision, accompanied by floaters, strobe-like flashes, and pain. What inquiries should I present to my neurologist? Is it plausible that the Nmdar antibody could remain present post-chemotherapy? Would a spinal tap be advisable? I suspect my neuropathy is worsening, yet it feels distinctly different from my chemotherapy-induced experience—what could this signify? I am willing to share some of my test results if necessary and would greatly value a new perspective on my situation.
Answers (1)
7/7/2025, 7:51:04 AM
OpenHealth AI
It's clear you have been through a challenging journey, and your concerns regarding your symptoms and their possible connections to your past treatment and existing conditions are entirely valid. Let's break down your situation and outline key inquiries that would be beneficial to discuss with your neurologist.
Main Points:
- Connection Between Symptoms and Past Treatments: There could be a relationship between your chemotherapy-induced neuropathy and your current symptoms.
- Potential for Autoimmune Activity: You might still be experiencing underlying autoimmune issues or other neurological disorders that are not related to chemotherapy.
- Need for Comprehensive Evaluation: A spinal tap and further tests could provide important insights into your neurological status.
Explanation:
Chemotherapy can have lasting effects on the nervous system, but it does not typically eradicate antibodies, as immune system elements can persist. Your symptoms, particularly their unilateral nature and the worsening neuropathy, warrant an updated evaluation to clarify whether they stem from chemotherapy effects or another underlying condition such as CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) or a different autoimmune disorder.
The tiny lesion found on your MRI and the EMG suggesting CIDP may indicate something more complex than residual chemotherapy effects. The fact that you notice distinct neuropathy symptoms could suggest a different problem requiring specific attention.
Next Steps:
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Inquiries for Your Neurologist:
- Antibody Testing: Ask if repeat Nmdar antibody testing (possibly via lumbar puncture) is warranted given your persistent symptoms and past case studies.
- Complicated Neuropathy: Inquire about your symptoms' relationship to CIDP versus chemotherapy-induced neuropathy, and how to differentiate between the two.
- Lumbar Puncture: Discuss the possibility and benefits of undergoing a spinal tap to evaluate for other potential autoimmune markers that could explain your symptoms.
- Brain Lesion Evaluation: Request more information regarding the significance of the small lesion found on your MRI, especially concerning your clinical symptoms.
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Addressing Autonomic Symptoms: Given the concerns about POTS and other autonomic issues, ask if tests can be conducted to rule this in or out, particularly as it relates to your heart rate and dizziness.
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Symptom Tracking: Keep a detailed diary of your symptoms, including frequency, intensity, and any triggers you observe. This can be a useful tool for your neurologist to better understand your experiences.
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Lifestyle Adjustments: Continue with dietary adjustments and monitor your gluten intake, especially as this seems to have provided some symptom relief. Ensure adequate hydration as well, which appears to impact your symptoms.
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Sleep Hygiene: Since sleep disturbances are notably impacting your quality of life, consider a routine incorporating calming activities before bedtime to enhance your sleep quality.
These inquiries can help your neurologist approach your situation holistically and guide further evaluation and management. Remember that it's important to advocate for your health, and your experiences are valid in shaping the dialogue with your healthcare providers.
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