Age: 49.0
Sex: F
Vaccine: COVID19
Symptoms: Biopsy skin abnormal, Blindness unilateral, Blood test normal, Burning sensation, Chest X-ray
Clinical narrative: 3/16/21 - J&J Covid vaccine - feeling bad & severe headache by that evening with new onset of burning pain nose & in all sinuses 3/25/21 - Diagnosed with sinus infection by allergy dr. Treated with 2 weeks of ceftin & oral steroids. Never had a fever or nasal drainage though. 4/12/21 - sinus infection clear by slide per allergy dr. Eyes & ears still awful with some dizziness. Sinus & nose burning continued.  4/23/21 - Steroid injection at PCP for cont symptoms. 5/10/21 - Cleared by ENT with normal tymphanograms  7/15/21 ? increased burning pain in nose and sinuses  7/2021 later in month - Increasing episodes of worsening fatigue  8/30/21 - CT of sinuses per allergy dr ? normal (ordered because of my frequent visits for sinus pain & burning) 9/18/21 - periods of heaviness & heart pounding & cold feet - too hard to even lift arms / too miserable to even watch TV 9/21/21 - negative covid test (only symptom fatigue) ? persisting for days after with intermittent ?lazy? feeling of right eyelid and some decreased vision in right eye 9/24/21 ? lots more nose & sinus burning - saw allergy dr - no sinus infection per slide 9/26/21 - Fatigue severe - no activity tolerated - around noon I started to develop the sensation of difficulty swallowing on the right side of my throat. I also felt flu-ish and feverish, but had no fever. No appetite. I went to ER for eval. Eye symptoms were dismissed. Soft tissue neck CT with IV contrast was normal. Dx with ?sore throat? and referred to neurology. 9/27/21 - Saw PCP the next day - ordered an MRI of my brain. Wants me to see rheum again and neurology. 9/27/21 - increased dry mouth feeling / right throat still feels abnormal, like a lump or not working / tongue (especially on sides) burning most of the time  9/30/21 - had MRI of brain/face/orbits / GYN did labs to check HRT & CBC & chem - NP at PCP?s okayed 10days of doxycycline 100mg bid x 10 days based on the CBC with elevated neutrophils (WBCs wnl ? but later over of course of illness lymphocytes would be low) 10/5/21 - Still having episodes of debilitating fatigue - meloxicam & tylenol help some / jaw tightening & right ear pressure / nose & sinuses & tongue burning  10/9/21 - fatigue still severe at times - meloxicam helps but not sustained / nose & sinuses burning / rear pressure & intermittent dizziness / right throat still strange  10/11/21 - Dr. - neurology - eval of right eye & throat & weakness complaints 10/15/21 - nose & sinuses burning a lot more again  10/18/21 - onset of tightness across chest and feeling that I can?t get a deep breath / head feels too heavy to hold up at times (over last 2 weeks off & on) / right groin & hip flexor intense burning pain  10/23/21 ? saw PCP - eval chest tightness & cont fatigue & increased right throat/ear/lower jaw discomfort - labs, ekg, breathing test, & CXR ? rx medrol dose pack  10/26/21 ? some nasal congestion / nasal burning increased  10/27/21 - still having episodes of right eye blurriness/laziness & tightness across jaw / right throat still feels strange / more right groin and right side abd pain 11/1/21 - followed up with Dr - recommended infectious disease consult and CT chest for cont CP & SOB / head feels so heavy, or just too weak to hold it up 11/10/21 - using soft cervical collar to help keep my head up when I can?t rest it against something / chest pain decreasing after medtrol dose pack 11/11/21 - saw neurosurgeon for eval upper back and neck pain with zaps mid back) / followed up with ENT for weird right throat sensation and burning nose and sinuses - noted mild swelling next to bridge of nose on right - did culture of something deep in my nose on R side ? results negative 11/12/21 - MRI of cervical and thoracic spine - awful flare of raging dry burning nose, sinuses, and lungs from the cold, dry environment - very SOB and more miserable after  11/15/21 - lots of facial tightness & tingling / increased dry mouth to misery level  11/23/21 - Infectious Disease consult ? dr suspects autoimmune disease vs vaccine injury 12/3/21 - everything burning but less than some days - steroids helping - more energy and less pain 12/7/21 - face and jaw tightness at new awful level with weird sensation like strained or tingly - feels odd / tongue weird at times / abd pain & weight loss persists  I began a cycle of what I assumed were ?allergy? problems after having the J&J vaccine on 3/16/21. I have been on and off doxycycline at various doses to treat my ocular rosacea. I resumed it 2/4/21 at 50mg and increased to 100 mg on 4/24/21. Less miserable by June, but I thought my symptoms would increase if outside - mainly that my nose and sinuses would feel like they were burning. Started to realize that actually was not true, as it was happening unrelated to going outdoors as well. Multiple trips to allergy dr since have shown no infection. Normal Ct of sinuses on 8/30/21. Honestly, I haven't felt completely well (despite the norm of eye misery ? or back to my baseline) since getting the J&J covid vaccine. (The sinus burning & frontal headache / burning began with a vengeance the day I got it.)   <<<Stopped keeping up with this timeline soon after this last entry. Throughout this major change in my health status, I have been evaluated by numerous specialists without a clear diagnosis. (Neuro x 2, cardiology x 2, allergy/immunology x 3, oncology, GI, ENT x 2, GYN, infectious disease, pulmonary, rheumatology x 3, oral surgery x 2)  I maintain a current med list that shows all the things I have tried and am currently taking. Major symptoms remaining: inability to sit up normally for more than short (like 5 min) periods without excessive effort and increased weakness / my head is too heavy for my body or my neck is weak (blood test for Myasthenia Gravis was negative) / chest tightness & feeling SOB frequently ? suspected ANS dysfunction / inablilty to tolerate strong odors or extremes of temperature or humidity ? feels like I am suffocating ? thus not going outdoors / burning pain in nose & face ? most likely neuropathy. Skin biopsy positive for small fiber neuropathy. POTS symptoms are somewhat improved with compression socks, dietary changes, staying hydrated, & slow position changes. Rapid heart rate & low BP have improved over last several months also. Basically, I feel like I have the flu most of the time, but my temperature stays below 100.0. Weight loss stopped around 6/2022, but I lost a total of 40 pounds without trying. Steroids offer a brief boost & so far are the most helpful of all meds. Unable to function normally or work outside the home.>>>