Ongoing Health Challenges Since January 2024: Experiencing Leg Pain and Weakness
Hello everyone. I’m reaching out in a state of urgency and uncertainty. I’m hoping that some of you might have insights or suggestions? (Just a note: I’m not a native English speaker, so I’ve tried my best with medical terminology, and I hope it’s clear enough.) My saga began in January 2024 when I started experiencing increasing discomfort in my back. By the middle of February, I endured intense pain in the mid-thoracic region. Upon visiting an orthopedist at the end of the month, I was dismissed as simply “overreacting.” Shortly thereafter, I noticed an unusual tingling and sensation of stinging in my legs, particularly around the thighs, accompanied by a persistent dull numbness. An MRI of my lumbar spine showed nothing unusual, but the thoracic MRI revealed two herniated discs at Th7/8 and Th9/10, which were compressing the spinal cord, although with no signs indicative of myelopathy. In April of 2024, a somatosensory evoked potential (SEP) test on my tibial nerve indicated that signals were not being transmitted to my brain. This finding was corroborated by doctors in the neurosurgery department, but they attributed the leg symptoms to other causes, leading me to a referral to neurology. By July 2024, after an admission to a neurology clinic and a lumbar puncture, the results were largely unremarkable apart from finding oligoclonal bands of type 4. The advice given was to seek outpatient treatment since no definitive cause could be identified. I began outpatient neurological therapy in August 2024, during which time I noticed a worsening of numbness in my hands, particularly affecting my thumbs, index, and middle fingers. Initially, I received minimal intervention until a nerve conduction study in December 2024 identified carpal tunnel syndrome, which has since deteriorated even while using a night splint, leading to a recommendation for surgery. Another nerve conduction study indicated issues with the peroneal nerve in my legs. In February 2025, I sought a second opinion from a different neurologist, coinciding with an orthopedic rehab program in January and February, unfortunately with no improvement. My symptoms intensified, along with troubling circulatory problems; my heart rate surged to 150–160 bpm upon standing or slight movement, only normalizing when I lay down. Currently, I am on beta-blockers to manage this. The new neurologist conducted an exhaustive re-evaluation, confirming carpal tunnel syndrome and tendinitis. Furthermore, along with the pre-existing disc herniations in my thoracic spine, a new herniation at C5/6 in my cervical spine was identified. A repeat SEP test reaffirmed that nerve signals to my brain were still lacking. Despite extensive examinations at a university hospital yielding normal results, I received a final diagnosis of functional disorder and chronic pain syndrome. My outpatient neurologist subsequently ceased my treatment. I find myself in a state of despair, battling daily pain. The discomfort in my thighs is pervasive, featuring a combination of dullness, sharp sensations akin to electric shocks, and immense weakness. My mobility has significantly decreased; previously, I could hike long distances, but now I struggle even on short walks. Additionally, the pain intensifies significantly right before my menstrual cycle, sometimes immobilizing me. I often feel dismissed by many medical professionals; I have to advocate fiercely for every test, desperate to reclaim my previous active lifestyle—filled with concert organizing, socializing, and dancing. Now, I mostly find myself isolated at home. Additional context about my health: - Female, 36 years old, normal weight, and historically active without engaging in specific sports. - Vitamin B12: 250 ng/L (slightly low but deemed acceptable by doctors; I'm managing this with supplements). - Abnormal 24-hour ECG showing ventricular events. - Creatine kinase: 360 U/L. - Chronic fatigue (I can only manage around three hours outside before needing a full day to recover). - Hand pain has improved slightly; however, my fingers still experience burning and numbness after use. - There’s some progress regarding pain in my forearms, yet I notice my right side is more adversely affected than the left. Is there anyone who can suggest further testing I may need? What additional steps can I take? It’s immensely challenging to accept that this might be my situation indefinitely. I would genuinely appreciate any insights or feedback. Thank you for taking the time to read my story!
Answers (1)
7/1/2025, 9:01:54 PM
OpenHealth AI
I'm sorry to hear about the ongoing challenges you're facing with your health. It sounds very overwhelming and frustrating, particularly given the significant changes to your lifestyle and the various medical evaluations you've underwent. Let's break down your situation and focus on steps you can take moving forward.
Main Points:
- Complex Symptoms: You have a combination of back pain, leg discomfort, and neurological symptoms that have led to various diagnoses.
- Seeking Clarity: It’s understandable that you want a clearer understanding of your symptoms and potential next steps.
- Supportive Self-Care: While addressing complex medical issues is important, there are self-care strategies that may help alleviate some of your current symptoms.
Explanation:
Your symptoms, including leg pain, weakness, and sensory issues, could be related to several factors, including your identified disc herniations, carpal tunnel syndrome, and possibly other neurological conditions. The challenge in managing your pain and mobility can be disheartening, especially when progressing through various medical appointments without definitive answers.
As you’ve already consulted multiple specialists, it is important to continue advocating for your health while also exploring supportive routines.
Next Steps:
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Symptom Tracking: Start a journal documenting your symptoms, triggers (like menstruation or physical activity), and how they impact your daily life. This can provide important information during doctor visits and help you identify patterns.
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Physical Therapy: Consider pursuing a focused physical therapy program that addresses both your back issues and the challenges in your legs. A physical therapist can tailor exercises to help strengthen your muscles and improve mobility.
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Manage Pain and Fatigue:
- Use heat or cold therapy on painful areas.
- Practice relaxation techniques such as mindfulness or meditation to help manage pain perception and emotional stress.
- Ensure that you break up activities into manageable segments with regular rest periods to conserve energy.
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Diet and Lifestyle Adjustments:
- Continue taking vitamin B12 supplements considering your borderline levels, as B12 can influence nerve health. Discuss dietary changes with a nutritionist if possible.
- Staying hydrated and maintaining a balanced diet can support overall health, including nerve function.
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Circulatory Concerns: Given your rapid heart rate, it’s crucial to monitor your symptoms closely. You might want to inquire about autonomic testing to better understand these symptoms, particularly if they worsen or impact daily activities.
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Emotional Support: Look for support groups or online communities for those experiencing chronic pain or similar conditions. Connecting with others who understand can be incredibly validating and supportive.
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Re-Evaluate Medical Support: If you're feeling dismissed by your current neurologist or healthcare providers, consider seeking a third opinion with a specialist who has experience in chronic pain or functional neurological disorders.
Final Thoughts:
Your situation feels heavy, but it’s essential to focus on small, actionable steps that empower you as you manage your health. Keep pushing for clarity and advocate for yourself; your concerns are valid and deserve attention. If you feel comfortable sharing your progress, I am here to provide ongoing support.
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