Seeking Guidance on Medical Journey
I’m a 21-year-old individual who identifies as non-binary, standing at 5 feet 3 inches tall and weighing 85 pounds. For the past 2.5 years, I have been grappling with extensive nerve pain throughout my body, along with gastrointestinal complications. While I've opted not to disclose my race, I currently find myself in a challenging situation with no ongoing medications, as my doctor advised me to cease all treatments due to ineffectiveness. A list of the medications I have tried will follow at the end of this post. Recently, I was hospitalized for severe vomiting that lasted 30 hours, making it impossible for me to ingest food or water. After receiving fluids and undergoing blood tests, which all returned normal results, the medical team dismissed my case, stating it wasn’t an emergency and thus not their concern since my condition wasn’t life-threatening. I have consulted with nine different specialists, yet none have provided any solutions. At my last few appointments, the physicians ultimately concluded, "All possible treatments have been exhausted; I’m unable to offer any further assistance, nor can I recommend another specialist." Is this really the end? Am I just supposed to accept that I can’t receive help? I’m left bewildered about where to seek care when even medical professionals have expressed their limitations. To provide some context, my chronic gastrointestinal difficulties and nerve pain have persisted for 2.5 years. I’ve seen a variety of experts, including four gastroenterologists, two neurologists, a rheumatologist, and pain management specialists. I assure you, these issues are not of a psychological nature; I’ve undergone numerous tests and trials with various medications, yet nothing has uncovered the underlying cause. Additionally, I’m aware that many online communities often remove posts if they suspect someone is seeking a diagnosis. Just to clarify, I’m not looking for a diagnosis through social media comments; I’m merely exploring what steps I might take next and hoping to connect with anyone who might have similar experiences. I don't believe that my symptoms are related to my diet, as any substance I consume—even water—induces immense pain. I will keep this post updated as I receive questions or additional information. Here’s a list of the medications I’ve previously been prescribed (please excuse any typographical errors; I have the full list at home, and being dyslexic, I may have made mistakes): - Metoclopramide - Omeprazole - Zoloft - Zofran - Gabapentin - Pregabalin - Various SSRIs (which often cause significant discomfort, hence my avoidance) - Hyoscyamine - Tizanidine - Diclofenac/Misoprostol - DEPO shot I’ll add further details of past medications once I have the chance.
Answers (1)
12/14/2025, 3:00:57 AM
OpenHealth AI
I'm really sorry to hear about the challenges you're facing with your health. It sounds incredibly frustrating to have been through so much without finding relief. Let's clarify your main points and outline the next steps you might consider taking.
Summary of Main Points:
- You have been experiencing chronic nerve pain and gastrointestinal issues for 2.5 years.
- You’ve seen multiple specialists without any effective treatments.
- You recently endured severe vomiting and received care but felt dismissed afterward.
- You are seeking direction and next steps in managing your complex health situation.
Explanation:
Chronic pain and gastrointestinal issues can be complex, affecting both physical and emotional well-being. It’s understandable to feel lost and overwhelmed, especially after seeing numerous specialists with no clear resolution. Your symptoms are real, and your persistence in seeking care shows strength.
Given that many traditional treatments have not worked, you might consider exploring a few specific avenues tailored to your situation:
Next Steps:
-
Consider a Multidisciplinary Clinic: Look for specialized centers or clinics that focus on chronic pain management or gastrointestinal disorders, where a team of professionals from different fields can collaboratively assess your condition. These clinics often combine various treatment approaches.
-
Explore Alternative Therapies:
- Physical Therapy: A physical therapist specializing in chronic pain may help you develop a tailored program focusing on nerve pain without exacerbating digestive issues.
- Chiropractic Care or Acupuncture: Some people find relief through alternative treatments, though it’s essential to approach this cautiously and communicate your health history.
-
Joint Evaluation of Symptoms: If you can, seek evaluation from a doctor who specializes in complex cases or functional medicine. They may consider conditions that have not yet been thoroughly explored, like mast cell activation syndrome or Ehlers-Danlos syndrome, which can both affect nerve and gastrointestinal function.
-
Support Groups or Online Communities: Engaging with others who experience similar health challenges can provide emotional support and potentially lead to recommendations for specialists or treatment approaches that worked for them.
-
Keep a Detailed Symptom Diary: Document any changes in your symptoms, food intake, activities, and any medications taken. This can help doctors identify patterns or triggers over time.
-
Consider a Palliative Care Consultation: Palliative care isn’t just for end-of-life situations; it focuses on improving quality of life for those with chronic illnesses. They can help in managing pain and discomfort even when the source isn’t fully understood.
Closing Thoughts:
It's completely understandable to feel discouraged right now, but remember, your health concerns deserve attention and you are not alone in this journey. Continue advocating for yourself and exploring new avenues—that’s extremely important. Stay persistent, and I hope you find the answers and relief you deserve. Please keep me updated if you have more questions or if there’s any way I can further assist you.
Related Questions
Is It Typical to Skip Physical Exams for Joint Issues?
Age: 22 years Weight: 76-77 kg Height: Over 5' 11" No current history of smoking or alcohol consumption Gender: Male For the last few years, I have experienced symptoms such as impingement, clicking, popping, grinding, and instability accompanied by pain in both my shoulders, knees, and elbows. These issues began in 2019. Recently, I consulted with two medical professionals here in India. They reviewed my MRI reports and recommended vitamin D supplements to address my severe deficiency, along with a couple of other medications for slightly elevated uric acid levels. Fortunately, all other blood tests returned normal results. The findings from the MRI were as follows: **Right Shoulder MRI:** - Decreased subacromial space - Supraspinatus tendinosis - Subacromial-subdeltoid bursitis **Left Shoulder MRI:** - Decreased subacromial space - Supraspinatus tendinosis **Right Knee MRI:** - Minor fluid accumulation in the gastrocnemius-semimembranosus bursa - Likely rupture of Baker’s cyst Tests conducted to check for autoimmune disorders returned negative results, and the consensus is that my injuries are likely sports-related, accruing over time. However, I am uncertain if it’s standard practice not to undergo a physical examination for these conditions or if I simply haven’t located the right healthcare providers. The initial doctor did refer me to a physiotherapist, but I did not adhere to his recommendations, as he failed to communicate or explain anything effectively, nor did he conduct a physical assessment. Meanwhile, the second doctor prescribed medication and mentioned a follow-up appointment in a few days to discuss my bloodwork, primarily aimed at normalizing my vitamin D and slightly reducing my uric acid. For various reasons, I did not pursue his prescribed treatment. Now, I find myself in a dilemma about whether my expectations are misguided — should I expect to receive a physical evaluation as part of my treatment, or am I simply consulting with unsuitable doctors? Any guidance would be greatly appreciated.
Persistent Lump on Arm for Over Two Decades
Greetings, I’m seeking guidance regarding a lump on my arm that has been present for more than twenty years. The size is comparable to a dime, and it has a noticeable bulge rather than being flat. The overall texture is quite solid, though there is a white section within that feels extremely hard, similar to a tooth. At times, it forms a scab, which occasionally falls off. However, it does not cause me any pain or discomfort. This lump is situated on the outer part of my left bicep. Thank you for any insights you can provide.
Misdiagnosed While Travelling: My Experience with a Skin Condition in Vietnam
About three weeks ago, I embarked on the Ha Giang loop in Vietnam, where I noticed a rash forming on the lower part of my buttocks, which I initially dismissed as a friction-related issue. However, two weeks later, I began to experience persistent bite marks on my feet. Disturbed by the situation, I visited a local pharmacy, where they took photographs of my rash and bites. The pharmacist then consulted with a doctor who diagnosed me with scabies. Having already taken my second dose of ivermectin, I noticed that the bite marks have evolved into strange-looking hives. My research indicates that post-scabies rashes can be common, yet these hives appear unusual. I've seen images of scabies, and what I'm experiencing doesn’t match. I'll provide pictures showing the progression from the initial bite marks to what they look like now, along with an image of the rash on my buttocks. Additionally, I've been dealing with diarrhea for the last two days, which I suspect is linked to alcohol consumption. Thankfully, I haven't exhibited a fever or other concerning symptoms; I feel relatively fine overall, but the itching has intensified considerably, leading to concerns. As a healthy 25-year-old woman from Scotland, I've never encountered any significant health or skin issues. I have no known allergies and am not taking any prescribed medications. Alongside the ivermectin, I have been instructed to use sebosan’s permethrin spray on myself twice daily. Thank you for reading my experience.
Seeking Insight: Is My Doctor Overlooking My Low T3 for Anemia Diagnosis?
Greetings! I’m a 19-year-old female, and I find myself somewhat bewildered by my latest lab findings and the guidance I've received from my doctor. I visited a dermatologist due to significant hair loss that I’ve been suffering from for over the past year. Furthermore, I’ve been battling a myriad of distressing symptoms for several years, including persistent tiredness that doesn’t improve with 8 to 10 hours of sleep, an inability to withstand cold temperatures, struggles with weight loss, and a severe skin condition that leads me to itch my legs so badly that I create sores and scars. Until now, I tried to overlook these issues, but the severity of my hair loss prompted me to seek professional help. The dermatologist's blood tests revealed some concerning indicators: a notably high inflammation marker, HS CRP, at 12.3 mg/L, alongside low thyroid hormone levels, with Free T3 measured at 2.9 pg/mL and Total T3 at 74 ng/dL. I had just completed a cold when I underwent the blood work—about a week after it began—so my dermatologist believed the elevated CRP could be a result of that recent illness. While she expressed concern regarding my thyroid levels and wanted to refer me to my Primary Care Physician (PCP) before suggesting any treatment, my PCP took a different stance entirely. He disregarded the thyroid concerns, citing that my TSH levels were normal at 1.04 mIU/L. Instead, he focused on what he described as "essentially anemia," pointing to past tests and claiming that my current elevated ferritin level of 127 ng/mL was misleadingly high due to the inflammation caused by my recent illness. This conflicting diagnosis is perplexing. While my PCP insisted that I might be iron deficient, my dermatologist had previously assured me that my iron levels were adequate. I found myself questioning the rationale behind my PCP’s dismissal of the low T3 levels and my other symptoms in favor of an iron deficiency narrative, especially since my ferritin is elevated. Ultimately, he opted to conduct another blood test solely for iron without including any thyroid checks, suggesting that he didn’t wish to invest time in exploring that aspect. The differing opinions from my dermatologist and PCP have left me confused about the right direction to take.
Concerns about Vertebral Artery Dissection Symptoms
A 30-year-old female with a history of right vertebral artery dissection and transient ischemic attack following a car accident about a year ago has been experiencing some troubling symptoms. She is currently on a regimen that includes aspirin, although she often forgets to take the medication. A computerized tomography angiography (CTA) performed six months prior indicated that the dissection remains unchanged; however, her neurologist mentioned that this is likely the typical appearance, suggesting that healing may not occur. Recently, over the past few days, she has been noticing a dull pain on the right side of her neck. Initially, she attributed it to her sleeping position, but the discomfort has persisted and intensifies during head movement. This sensation resembles the pain she experienced during her previous vertebral artery dissection episode. Additionally, she’s also suffering from a mild headache at the base of her skull, rated around 2-3 out of 10 in terms of severity. She feels a peculiar dullness on the right side of her face compared to the left, though there are no symptoms like tingling or drooping, and she is not experiencing any vertigo. She is seeking advice about whether these symptoms might be linked to her prior dissection and is uncertain about where to seek medical attention. Should she wait until after the weekend to contact her neurologist, or would it be more appropriate to visit urgent care or an emergency room? Ideally, she would prefer to avoid an emergency department visit if possible.