Looking for ideas
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This is going to be a lot. Thanks in advance for anyone who responds. Age/sex/height/weight: 49F 5'2" 180lbs Diagnoses: Endometriosis, Ehlers-Danlos Syndrome, POTS, asthma, hypothyroidism, obstructive sleep apnea, chronic migraine, mild chronic creatinine elevation (\~1.2 for >15yrs now), generalized anxiety, major depression, idiopathic insomnia, allergic rhinitis Other major history: hysterectomy 9y ago Medications: Vilazodone 40mg, tramadol 75mg/day, symbicort 160-4.5, midodrine 5mh 2x/day, cyclobenzaprine 10mg, levothyroxine 25mcg, trazodone 100mg, esomeprazole 20mg, Flonase Timeline of new issues: despite all of the above, up until 2024 I was stable enough to manage a full time job. I couldn't do much else but I loved what I did so it was worth it (I was a research scientist in reproductive physiology). Spring 2024 I caught COVID and although it took a couple months I seemed to recover. In fall 2024 my contract ended and I was actively looking for a new position. Then in December 2024 - Jan 2025 I started noticing new symptoms that I couldn't figure out. I started having new blurriness & doubling to my vision that my optometrist could not find a reason for. Then I started getting more/worse headaches. Then my fatigue and chronic pain started to worsen. By spring 2025 I had to halt my job search because the symptoms were too severe to consider getting back to work. In summer 2025 I moved from California to Illinois to live with my mom for financial reasons. During the moving process I had to push myself past my limits for about 2 weeks straight. My fatigue was significantly worsened by this and never got better. I now have about 2 usable hours of energy per day and struggle to keep up with basic hygiene. My hand pain and eye issues are too severe to allow me to get back into a lab even if I had the energy to work. Testing has ruled out: MRIs normal, no structural neurologic or eye issues; not Lyme or long COVID; not a medication interaction (tried switching some meds and didn't help). While my ANA is historically abnormal (40:1 speckled) all other rheum tests have been negative and there is no reason to suspect the ANA is caused by anything other than my connective tissue disorder. My TSH has been stable and I use my bipap nightly so it isn't thyroid or OSA related. No exposures to other major diseases that could explain the symptoms. I have an appointment coming up with a rheumatologist to see if they have any ideas, and I'm making an appointment with an opthalmologist to double check what they can do. But every doctor I've seen is at a loss so far and my mental health is at rock bottom over the loss of my career and independence with no answers in sight. What other specialists should I see? What tests should I request? Any ideas are helpful. Thanks.
AI Analysis
- Medication
- vilazodone, tramadol, budesonide/formoterol (Symbicort), midodrine, cyclobenzaprine, levothyroxine, trazodone, esomeprazole, fluticasone (Flonase)
- Condition
- endometriosis, Ehlers-Danlos syndrome, POTS, asthma, hypothyroidism, obstructive sleep apnea, chronic migraine, chronic kidney elevation (mild creatinine), generalized anxiety, major depression, idiopathic insomnia, allergic rhinitis, vision problems (blurriness/diplopia), fatigue, chronic pain
- Geography
- us confirmed