Navigating Foot Drop and Foot Deformities at 38 Years Old
Hello everyone, I’m a 38-year-old trans man currently exploring potential Charcot-Marie-Tooth (CMT) disease through the online platform NeuraHealth. My concern stems primarily from noticeable changes in my feet—specifically, I have extreme high arches (pes cavus), pronounced bunions, a noticeable bone spur on the top of one foot, and several toes that are becoming claw-like, in addition to experiencing symptoms related to blood pooling and Raynaud's phenomenon. I've been struggling with weakness in my legs, particularly noticeable in my right foot where I suffer from foot drop. This condition began in January, resulting in my inability to elevate or spread my toes. To aid my mobility, I rely on a prescribed ankle-foot orthosis (AFO) and forearm crutches. Lately, I’ve also begun to notice tingling in my hands—especially in my right hand, which has also developed an ulnar drift and weakened control of my pinky finger. A tremor has also developed, complicating tasks such as handwriting and increasing my worry about potentially losing the use of my crutches in the future. In addition, I have no Achilles reflexes, which has been linked to a contracted Achilles tendon and severe plantar fasciitis (with a thickness of 0.9 cm). My arches frequently cramp and go into spasms throughout the day, particularly after prolonged standing. After undergoing an EMG/NCV, which revealed polyphasicity along with unclear, large amplitude voluntary motor unit potentials, my local neurologist dismissed my case, which was quite distressing. Fortunately, I have an appointment with a CMT specialist in October to further investigate my diagnosis, following discussions with the doctors from Neura. In the meantime, I’d appreciate any insights or suggestions you might have. Photos are available in the comments for further context.
Answers (1)
8/13/2025, 10:20:58 PM
OpenHealth AI
Thank you for sharing your situation, as I can understand how challenging and concerning these symptoms must be for you. Based on your description, it seems like you are experiencing a combination of issues related to foot drop, foot deformities, and potential neurological concerns. Here’s a structured response that may help you navigate this situation:
Key Takeaways
- Foot Drop and Deformities: The symptoms you're experiencing, including foot drop and deformities, can be associated with underlying conditions like Charcot-Marie-Tooth disease (CMT), along with other potential neurological issues.
- Upcoming Specialist Visit: It's crucial to prepare for your appointment with the CMT specialist, as they may be able to provide more clarity and a tailored management plan for your symptoms.
- Self-Care Strategies: While waiting for your appointment, consider implementing some strategies to help manage your symptoms.
Explanation
Foot drop, which is the inability to lift the front part of your foot, can significantly impact mobility and is often linked to neurological conditions affecting the nerves that control muscles. The presence of high arches (pes cavus), bunions, and the symptoms you're experiencing with your hands and feet may point to a neuromuscular disorder like CMT. The absence of Achilles reflexes and symptoms of Raynaud's phenomenon could further suggest a broader neurological issue.
While it's understandable to feel anxious about your symptoms, it's good to know you have an appointment with a specialist who can provide more insight. The prior neurologist’s dismissal might feel discouraging, but different specialists can offer varied perspectives on your condition.
Next Steps
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Prepare for Your Specialist Appointment:
- List Your Symptoms: Write down all your symptoms, including the timeline of when they began and any aggravating or relieving factors.
- Document Your Questions: Prepare a list of questions for the specialist, particularly about the diagnosis, potential management options, and future implications for your mobility.
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Self-Care Measures:
- Foot Care:
- Continue using your prescribed AFO to provide support and stability.
- Gently stretch your arches and calves to help relieve tightness and cramping.
- Consider using supportive footwear that accommodates your foot's arch and shape.
- Manage Symptoms of Raynaud's:
- Keep your hands and feet warm, and avoid prolonged exposure to cold.
- Stress management techniques might also help minimize episodes.
- Foot Care:
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Monitor Your Condition:
- Keep track of new symptoms, such as increased tingling or tremors, and note any changes in your mobility.
- If symptoms worsen significantly or change, consider reaching out to your healthcare provider sooner.
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Connect with Support Groups:
- Consider joining a support group for individuals with CMT or similar conditions to share experiences and strategies that others have found beneficial.
Remember, it’s essential to stay proactive about your health and seek guidance from your upcoming specialist. You are taking the right steps towards understanding and managing your condition. If you have any further questions or need additional clarification, feel free to ask.
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