OpenHealth Q&A

Should I Pursue a Second Opinion for Hypermobile EDS at 19?

As indicated in the title, I am a 19-year-old woman who received a diagnosis of hypermobile Ehlers-Danlos Syndrome (hEDS) about three years prior. For those who prefer a concise overview, here’s a brief summary: I have a video in the comments that hopefully captures the hypermobility of my knees and the sounds associated with them. Given my experiences, should I explore the option of a second opinion after feeling dismissed regarding my condition? Here’s a more detailed account of my situation: I endure considerable discomfort in my knees, primarily due to hypermobility, which often leads to my kneecaps subluxing while walking. To manage this pain, I now depend on forearm crutches, possibly due to muscle weakness, for which an EMG is in the works for May. Additionally, my aching knees and hypermobile hips seem to cause my hips to overcompensate, exacerbating the pain—surprising, isn’t it? Around a month ago, I finally mustered the courage to have my right knee examined. Although both knees can be problematic, the right one has been particularly troublesome. I visited an orthopedic specialist at a medical group in my area called ORA, filled out the necessary paperwork, and stated that my concern was my right knee. When the doctor initially entered, he mistakenly showed me an X-ray of my left wrist, which is another EDS-related issue I’m currently ignoring. He said, "So, you are here for your left wrist?" I chuckled awkwardly and clarified, "No, it’s my right knee." He seemed a bit confused and stepped out, returning a few minutes later. The remainder of the visit felt hurried. He instructed me to extend my leg, and I asked if he wanted it fully straightened or hyperextended since he was looking for crepitus. He didn’t respond, so I remarked, "Okay, I won’t hyperextend, as I want to avoid further injury." Consequently, he didn’t hear the noises emanating from my knees and merely suggested, "You could opt for a CT scan if you *really* want, but nothing appears to be wrong." I attempted to convey how significantly this affects my life, especially considering that obtaining an insurance approval for tests typically requires a doctor’s referral. Plus, I believe having a joint specialist on my healthcare team would be beneficial for managing my condition. In a moment of vulnerability, I started to tear up. I strive to keep my emotions in check, yet I find myself crying at appointments out of desperation for someone to truly hear my concerns—and occasionally, tears of relief when they do listen. Despite taking deep breaths to compose myself, my emotional state seemed to disconcert him, prompting him to leave swiftly and not return. Ultimately, I had to navigate my way out of the building alone, as no one assisted me in the confusing layout. The pain has been unbearable, and despite attempting conservative strategies that are usually recommended for joint pain or hEDS, such as bracing and physical therapy, my condition appears to be deteriorating. I also have legitimate concerns about potential joint damage leading to arthritis, a common complication associated with my connective tissue disorder. While I can’t share a video here, I hope to include one in the comments that illustrates the hypermobility of my kneecaps along with the noises I notice when moving my leg; my right knee is especially loud and consistent with these sounds. My primary inquiry is whether my worries are unwarranted or if they sufficiently justify the pursuit of a second opinion. Managing all my medical appointments can be overwhelming; if a needless visit could be avoided, I would be grateful. I understand that diagnosing conditions is complex, so my question is, should I go through with this? If it seems worthwhile, are there specific points I should raise or actions I should take to assist any future doctor in grasping the full picture of my situation? Thank you for your insights!

Answers (1)

3/29/2025, 4:30:54 AM

OpenHealth AI

It sounds like you are experiencing significant discomfort and frustration with your current management of hypermobile Ehlers-Danlos Syndrome (hEDS), and seeking a second opinion could be a worthwhile step toward better care. Your concerns about joint pain, mobility issues, and the dismissive experience with your previous doctor are valid and deserve attention.

Understanding Your Situation:

1. Chronic Pain and Discomfort: hEDS often leads to joint instability, pain, and other complications like subluxations, which you've described. Your dependence on forearm crutches indicates the severity of your condition.
2. Emotional Impact: It’s understandable to feel overwhelmed or dismissed, especially when advocating for your health. Tears during medical appointments often indicate the emotional toll of managing a chronic condition.
3. Need for a Specialist: It’s crucial to have a comprehensive healthcare team that listens and validates your experiences, especially with conditions like hEDS that can vary greatly between individuals.

Next Steps:

1. Pursue a Second Opinion: Given your experience, seeking a second opinion can provide you with new perspectives and treatment options. Choose a physician or a clinic that specializes in connective tissue disorders or rheumatology, where they are accustomed to handling cases like yours.

2. Documentation: Prepare for your next appointment by keeping a symptom diary. Note:

   • Specific symptoms and when they occur.
   • Any patterns in pain or mobility issues.
   • Responses to previous treatments (like physical therapy, bracing, etc.).
   • Emotional responses during flare-ups or when seeking care.

3. Communication: Clearly communicate your concerns:

   • Describe how the pain affects your daily life and activities.
   • Mention your experience with the previous doctor, including feeling dismissed during the appointment.
   • Highlight any physical limitations and your desire for more effective management strategies.

4. Request Tests or Referrals: If you believe imaging or specific referrals could be beneficial, don’t hesitate to ask:

   • Emphasize any specific concerns about joint damage or progression towards arthritis.
   • Inquire about a referral to a physical therapist who specializes in hEDS if you haven’t already.

5. Support Systems: Consider reaching out to support groups for individuals with hEDS. Connecting with others who share your experiences might not only provide emotional support but also helpful advice on navigating the healthcare system effectively.

Your health and comfort are important, and pursuing the care you need is a proactive approach. Trust your instincts—if your concerns feel significant, they likely are, and seeking another opinion can help ensure that you receive the attentive care required for managing your condition effectively.