OpenHealth Q&A

Unraveling the Mystery of My Walking Difficulties After Three Years

At 27 years old and weighing 180 lbs at a height of 5'7", my journey over the past three years has been fraught with challenges related to mobility. Briefly summarizing: I've endured over a decade of seronegative rheumatoid arthritis treated with biologics, along with hypermobile Ehlers-Danlos syndrome, scoliosis, and chronic migraines, both with and without aura. Additionally, I've experienced orthostatic intolerance and have suffered three minor concussions. Lately, I’ve faced persistent numbness, weakness, and pain in my legs, along with increasing incontinence. Consultations with a neurologist, neurosurgeon, rheumatologist, and physical therapist haven't yielded clear answers about my condition. Today is particularly painful; there’s an unbearable ache in my lower back and legs, making it almost impossible to find a comfortable position, which severely hampers my ability to walk. I feel desperate to uncover effective next steps for my situation. In three weeks, I’m scheduled for a repeat EMG, and if the results appear normal, my doctors advise proceeding to a lumbar puncture. I’m eager to explore any additional avenues we might pursue, such as blood tests, a CT scan, or a standing MRI. I welcome your suggestions regarding potential diagnoses or tests I should consider. I’ve attached my symptom notes that have been shared with my healthcare providers. An EMG conducted three years ago indicated only mild C7 radiculopathy. Comprehensive MRIs of my spine have been carried out before and after my symptoms began; the latest imaging was completed just recently. According to the neurosurgeon, my spinal health appears satisfactory. The MRIs confirmed known issues like mild facet arthritis in the lumbar region and mild dextroscoliosis in the thoracic area, alongside some abnormal curvature in my neck attributed to muscle spasms. No changes have been noted in my brain MRIs over the past decade, and there’s been no sign of multiple sclerosis on these scans. Interestingly, I’ve also been experiencing a yellowish fluid seeping from my ears after physical exertion, a decrease in my sense of smell, and noticeable hearing loss since the onset of my symptoms. Over the last few months, I’ve developed sores the size of pimples on my arms, chest, and scalp, which require treatment with antibiotic ointment and regular cleaning with rubbing alcohol to heal satisfactorily. I’ve been tested for diabetes due to suspected reactive hypoglycemia, but results show I am not diabetic. **Details of My Leg Issues:** For three years, I have battled leg numbness that has escalated to include incontinence, episodes of falling, and significant difficulty in walking. The numbness can affect any part of the leg, from toes to hips. It typically surfaces almost instantaneously when lying down with my legs elevated or when seated cross-legged. In contrast, lying on my back, sitting on hard surfaces, or carrying weight gradually intensifies the numbness. Navigating stairs exacerbates my symptoms, causing my legs to feel unusually heavy and leaving me breathless. When one or both legs become entirely numb, they cannot support my weight, resulting in falls. Additionally, I experience groin and saddle area numbness when sitting in a chair or on the toilet, as well as while cross-legged or lying down. Usually, if I have groin numbness, my legs are unaffected and vice versa. This kind of numbness is notably different from the sensation of a leg falling asleep. It is accompanied by a gnawing burning pain, and when the numbness subsides, residual pain often intensifies. Typically, I awaken once each night to use the restroom. If I’m on my back, I may not feel my groin or recognize the need to urinate until awakened by pain. After rising, I may suddenly lose control of my bladder without realizing it until I notice moisture on my leg. Throughout the day, I only recognize the need to urinate when it becomes painful, and often when I stand, I face incontinence at that point. Occasionally, while standing, I get an odd sensation, as if there are bugs crawling on my legs or water splashing against them, particularly when washing dishes. I find substantial relief from my symptoms when using a custom wheelchair with a specialized cushion and have noticed that my legs and back pain respond well to treatment with Journavx. During exacerbations, I typically experience heightened pain in my mid-back, with tenderness in specific areas, and surrounding muscles tightening due to spasms.

Answers (1)

2/6/2026, 6:40:52 PM

OpenHealth AI

I'm really sorry to hear about the difficulties you're facing with your mobility and the various challenges that have compounded your situation. It sounds incredibly frustrating, especially after three years of seeking answers. Here are some key points to consider, explanations of your symptoms, and actionable next steps.

Main Points:

1. Complex Medical History: You have a multifaceted medical background that can complicate diagnosis and treatment, involving conditions such as rheumatoid arthritis, hypermobile Ehlers-Danlos syndrome, and new concerning symptoms like numbness and incontinence.
2. Symptoms' Impact on Daily Life: Your symptoms, including persistent leg numbness, pain, and episodes of incontinence, are affecting your mobility and quality of life.
3. Upcoming Tests and Possible Next Steps: You're scheduled for an EMG and possibly a lumbar puncture, which are important for further insight into your neurological symptoms.

Explanation:

Your symptoms could stem from various sources due to your existing conditions. The combination of Ehlers-Danlos syndrome and rheumatologic issues could contribute to neurological complications, causing numbness and weakness in your legs. Additionally, the findings from your MRIs suggest there's no significant spinal injury, which is reassuring, but they might not capture softer tissue problems like nerve entrapments or peripheral neuropathy. Given your symptoms, it’s essential to differentiate between central and peripheral causes of your leg difficulties.

Next Steps:

1. EMG & Lumbar Puncture: Ensure you're well-prepared for your EMG. Highlight any specific symptoms that occur before or during tests. If the EMG normalizes, the lumbar puncture can help assess for conditions like inflammatory diseases affecting your nervous system.

2. Consider Multidisciplinary Review: Given your complex symptoms, it might be worthwhile to discuss with your healthcare team whether a multidisciplinary approach (involving neurologists, rheumatologists, a pain specialist, and physical/occupational therapists) can provide a more comprehensive treatment plan.

3. Symptom Management:

   • Pain relief: Continue using Journavx as it’s helping manage your pain.
   • Physical support: Since your custom wheelchair has been beneficial, ensure you're using it as much as possible to prevent further falls and enhance mobility.
   • Symptom Tracking: Keep a detailed diary of your symptoms, including when numbness occurs and potential triggers, to share with your healthcare providers.

4. Potential Tests: If your symptoms continue or worsen, you might discuss the following tests with your healthcare providers:

   • Blood Tests: Additional tests for vitamin deficiencies (e.g., B12, vitamin D, electrolytes) which can contribute to neuropathic symptoms.
   • CT or MRI: These can identify structural abnormalities or changes in soft tissues that might contribute to your symptoms.
   • Nerve Conduction Studies: If not included in the EMG, these may help assess the functionality of your nerves.

5. Lifestyle Adjustments:

   • Manage Overexertion: Balance activity with rest to prevent flair-ups.
   • Hydration & Nutrition: Proper hydration and nutrition can help with overall wellness, which is vital given your symptoms.

I hope these suggestions will guide your discussions with your healthcare team and provide you with some degree of relief and reassurance. His complex situation requires careful monitoring and tailored care, so please take it one step at a time, and know that seeking support can help you navigate these challenges.