Navigating My Medical Journey: An Overview
Greetings, everyone! This is 25FTM, standing at 5'7" and weighing approximately 190 lbs. Currently, my medication regimen includes vibryyd, adderall, androgel, valtrex, lamotrigine, seroquel, mirtazipine, omeprazole, and I recently added keppra in late June. Here's a rundown of my health situation from head to toe: **Neurological Issues:** - Detected a vascular malformation measuring about 10mm in the right mesial temporal lobe (April). - Experiencing persistent floaters in my eyes. - Occasionally, I find lesions on my tongue and inside my mouth. - I've noticed clenching of my jaw. **Spine and Musculoskeletal Health:** - Recently diagnosed with mild thoracic endplate changes (June). - I’ve been dealing with bone pain, particularly in my legs since March. - My joints frequently crack and feel stiff and painful. **Cardiovascular Symptoms:** - Diagnosed with sinus tachycardia exhibiting borderline left axis deviation (June). - My heartbeat often feels like a throbbing sensation, perceptible throughout my entire body. **Digestive Health:** - Identified sclerosing mesenteritis (April). - Mild diverticulosis noted in my colon (June). - Experiencing bleeding during bowel movements. - My abdomen often feels uncomfortably bloated. **Dermatological Concerns:** - Developed a sore on my inner thigh (October 2024) alongside intermittent rashes. - Similar rashes have appeared as raised welts under my armpits and seem to flare up with heat/sweating (May/June). - Noticed an increase in petechiae across my body. - I frequently experience itching and a crawling sensation on my skin. - Occasionally, I observe dark red spots on my face and dark red streaks on my inner leg after taking a shower. **General Health Updates:** - Diagnosed with reticulocytosis (April) and mild anisocytosis (May). - I’ve found it challenging to achieve orgasm, with sensations feeling diminished. - Seizures seem to initiate in my abdomen while I remain conscious and continent (11 episodes recorded between May 21st and June 27th, ceased after starting keppra). *An EEG did capture a seizure during light stimulation, which rendered me momentarily speechless but was classified as non-epileptic.* **Medical History:** I've struggled with GERD, syphilis, and have had two concussions in the past. There’s a family history of Lynch Syndrome and gastrointestinal cancers, although my mother does not carry the gene. A CT scan from 2020 identified enlarged lymph nodes on my mesentery, but it wasn’t until March of this year when I became aware of their existence. The ER staff informed me that their size had not changed since 2020, which caught me off guard. Since October 2024, I’ve felt a general decline in my health, with significant weight loss—going from around 215 lbs to fluctuating between 175 lbs and 190 lbs depending on my gastrointestinal situation. I attribute some of the weight change to starting Adderall in March 2024, which might have affected my appetite, but there's an unsettling feeling that something more serious is at play. I expressed these concerns to my primary care physician back in March, sensing a strong indication that something is amiss with my body. Recently, I've shifted to feeling a pressing urgency regarding my health. **Healthcare Engagement:** Since October 2024, I have made a total of 19 visits, not counting specialist appointments. **Consultations with Specialists:** - **Neurologist:** After diagnosing me with PNES, he referred me to a clinic in the city and recommended against pursuing further evaluation for my vascular malformation, deeming my seizure control through keppra as coincidental. - **Gastroenterologist:** Met with a gastro nurse practitioner for the first consultation last week; I’m now set for my first upper endoscopy and colonoscopy on August 5th. - **Hematology:** My primary care provider submitted my referral incorrectly, so I'm still waiting for my first appointment on August 1st regarding potential internal bleeding. - **Ophthalmology:** An uveitis expert diagnosed my dry eyes, advising artificial tears, but discouraged any further investigation. **Planned Treatments:** - Follow up with the PNES clinic in the city. - Attend upcoming endoscopy and colonoscopy, followed by a follow-up consultation in two weeks. - Hematology appointment on August 1st. So, what are your thoughts? Do you think I'm in a precarious position? Are you as eager to hear the results from these tests as I am? The thought that my story might one day contribute to medical literature is the motivation that keeps me going, so I hope you find this journey as perplexing as I do! Take care of yourselves. 🫂 If I can manage ten minutes of gentle yoga in my current state, you can certainly increase your water intake. I believe in our abilities!
Answers (1)
7/27/2025, 4:50:51 PM
OpenHealth AI
Thank you for sharing your comprehensive health update. It sounds like you’re navigating a complex health situation with multiple concerns, and it's understandable to feel urgency about your health. Here are some key points and suggestions regarding your current medical journey:
Key Points
- Multiple Health Concerns: You have several diagnosed conditions affecting different systems in your body, including neurological, musculoskeletal, cardiovascular, gastrointestinal, and dermatological issues.
- Recent Weight Loss: Fluctuating weight, particularly weight loss, is concerning and could be related to your gastrointestinal health issues or medication side effects.
- Engagement with Specialists: You are actively seeking care from specialists in various fields, which is crucial.
Explanation
Your health status involves a variety of symptoms that can result from complex interactions between your conditions and medications. The weight loss and gastrointestinal symptoms, especially the bleeding during bowel movements, should be closely monitored, as they may indicate underlying issues that need immediate attention. Your commitment to follow-ups and testing is essential, as those will help clarify your health status and guide treatment options.
Next Steps
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Keep Track of Your Symptoms: Maintain a detailed diary of your symptoms, noting any changes, triggers (like food or stress), and the timing of your gastrointestinal issues. This information can be invaluable for your specialists.
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Prioritize Upcoming Tests: Make sure you attend your scheduled upper endoscopy and colonoscopy on August 5th and prepare for them as advised by your healthcare provider. These tests are crucial for diagnosing potential issues like sclerosing mesenteritis and diverticulosis complications.
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Stay Engaged with Specialists: Continue to advocate for your health during your appointments, including the upcoming hematology appointment on August 1st. It might help to prepare questions or concerns you wish to address regarding internal bleeding or reticulocytosis.
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Monitor Medication Effects: Since you noted significant weight loss potentially related to Adderall, consider discussing this with your primary care provider or psychiatrist during your next appointment. Adjusting your medication might help improve your appetite if this is an issue.
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Health Education & Support: Seek out patient support groups that share experiences with similar conditions. Connecting with others can provide emotional support and valuable insights into managing chronic conditions.
Empathetic Note
It’s clear you’re facing a challenging journey with many complexities. Your proactive approach and ability to keep pushing forward is commendable. Stay focused on your health priorities and remember to reach out for support from healthcare professionals and your community. You're not alone, and every step you take towards understanding and managing your health matters. Take care of yourself!
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