Unusual Neurological Symptoms
I am a 25-year-old male, standing at 5'7" and weighing 150 pounds, and I received a diagnosis of ankylosing spondylitis in January 2024. My treatment began with indometacin, after which I transitioned to etanercept, administered at a dosage of 25 mg twice weekly, alongside leflunomide at 10 mg daily from March until August. In August, I began experiencing discomfort in my lower back, but this sensation was notably different, resembling neuropathic pain. Since that time, I have encountered similar discomfort across various parts of my body including my face, neck, spine, trunk, fingers, and toes. This pain has been intermittent and is often accompanied by feelings of numbness and twitching. I discontinued leflunomide in August, and in January, I stopped etanercept under the assumption that these medications might have been contributing to my symptoms. I am currently on tofacitinib, taking it at 5 mg twice daily. I consulted with a neurologist who conducted a series of tests, including white blood cell counts, vitamin B12 levels, serum electrophoresis, immunofixation, electromyography (EMG) and conduction studies, as well as MRI scans of my brain, cervical spine, and lumbar region. All results appeared to be within normal ranges. This experience has been quite distressing for me, and as a person prone to anxiety, I would greatly appreciate any advice or insights regarding my situation.
Answers (1)
3/26/2025, 10:20:34 PM
OpenHealth AI
It sounds like you're going through a challenging time with these unusual neurological symptoms. Your experience of neuropathic pain, numbness, and twitching across different areas of your body can indeed be distressing, especially when you're already managing a condition like ankylosing spondylitis. It's great that you've sought medical advice and comprehensive testing.
Explanation
Neuropathic pain can arise from a variety of causes, and in your case, it might be related to autoimmune processes, nerve compression, or irritation—not uncommon in individuals with ankylosing spondylitis. Your tests returning normal results is reassuring but also understandably frustrating, as it can leave symptoms without an obvious explanation. It’s also important to recognize how anxiety can amplify your perception of symptoms, making them feel more distressing.
Next Steps
Here are some prioritized actions you can take moving forward:
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Symptom Tracking: Keep a detailed diary of your symptoms, noting when they occur, their intensity, and any potential triggers such as activity level, stress, or nutrition. This could help identify patterns or exacerbating factors.
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Neurology Follow-Up: Given that your symptoms persist, discuss with your neurologist about further options. Sometimes, additional tests or referral to a pain specialist or physical therapist may be beneficial.
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Manage Anxiety: Consider integrating stress management techniques such as mindfulness or gentle yoga tailored for individuals with back pain. Cognitive-behavioral strategies can be particularly helpful for managing anxiety in relation to health concerns.
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Medication Review: Maintain an open conversation with your healthcare provider regarding the effectiveness and side effects of tofacitinib and any other medications. Modifying your treatment plan may provide relief if neuropathic pain persists.
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Physical Activity: Engage in gentle, low-impact exercises that focus on flexibility and strengthening, as recommended for ankylosing spondylitis. Activities like swimming or stationary cycling can help with movement without straining your lower back.
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Nutrition and Hydration: Ensure you are staying well-hydrated and maintaining a balanced diet, rich in anti-inflammatory foods that can support overall health.
Finding support—whether through friends, family, or potentially a support group—can also be incredibly beneficial. Remember, you're not alone in dealing with these concerns. Let me know if you'd like more specific techniques or information on any of these suggestions!
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