I hate to be that physician but in the absence of any actual findings on multiple MRI, ECHOs, Carotid US, sometimes conversion disorder may be more likely than a rare esoteric disease. That being said, what led you away from conversion disorder?
My sister (30, Hispanic, 5'3", about 250 lbs) has several medical conditions and a long history of undiagnosed neurological symptoms.Two or three years ago, she started having numbness and weakness in her hands and feet and sometimes arms and legs that got much worse in the heat. She was having a couple of other symptoms at the time (can't remember, but I think one was having trouble seeing out of one eye) that made us wonder if she might need to be screened for M.S., but she didn't have insurance at the time and it resolved after a couple of months, so she never got it checked.Last year in June, she started having multiple grand mal and absence seizures per day, including episodes of stat ep, and an EEG confirmed temporal lobe epilepsy. She also had periods of disorientation with no obvious seizure activity. She tried several medications and they finally settled on max dose Depakote. She has not had a seizure in six months that she knows of.Two or three months ago she suddenly developed the inability to tell if her bladder was full and she also had sudden full releases of her bladder. This has been improved with medication.On June 8th, she went to the ER for a severe headache. She was diagnosed with cervicogenic headache caused by muscle spasms in her back and neck (new onset).On June 29th, the ER gave her a steroid injection (for asthma) in the front of her left thigh and her thigh immediately went numb. It remained numb until this past Monday, when she developed severe pain in her thigh with difficulty walking and bearing weight on that leg. There was no redness, swelling, or other obvious indication of infection or blood clot. Her PCP said it was likely femoral nerve entrapment as a result of the injection and that it would likely resolve over time.Last night (Thursday), just before 5 pm, she had a sudden onset of left sided numbness in her face, neck, left arm, and left leg. She could no longer feel the nerve pain in her thigh at all. She also had blurry vision in both eyes. The paramedics noticed slurred speech, word finding problems, and facial droop. She was able to make it to the stretcher with help. By the time that she got the ER (level 2 stroke center), her entire left side was paralyzed and she had zero sensation on that side. Whenever she tried to lift her left leg, visible muscle spasms were present in her thigh. She also could not feel her pubic region at all and had great difficulty urinating. At no point did she have a headache. She said she had no lapse in memory and does not believe she had a seizure (her SO was with her also). Her blood pressure and blood glucose were normal. Head CT and MRI did not show signs of either a hemorrhagic or ischemic stroke. After a couple of hours, she showed slight improvement - able to slightly lift her affected arm and leg, although she still has no sensation. The facial droop and slurred speech had mostly resolved, but she was still having word finding problems. She was told it was likely a TIA caused by her Nexplanon and that it would be completely resolved by morning. They said if it wasn't a TIA, it could either be an unusual presentation of a seizure or a psychiatric condition (she has depression, anxiety, PTSD, and ADHD, all controlled). She was admitted to the step down unit for observation. They said they could not give her any of her medications until the hospitalist approved them.This morning (Friday) my sister had recurrence of the left sided numbness and could no longer move her arm and leg. The hospitalist was surprised to find that the symptoms had not resolved. The hospitalist said it was likely not a TIA and that they would be looking for other causes, like M.S. The symptoms slowly began to improve again, then the numbness returned along with the paralysis. This has improved slightly again. She had a repeat head MRI and CT, an echo, and a carotid ultrasound, all normal. She was assessed by speech therapy (normal) and PT/OT, who found severe deficiencies and recommended inpatient rehab. At no point throughout the day was she given any of her regular medications, including her Depakote, which is critical for her. The nurse didn't answer any of her call lights all day, and she sat in her own urine for hours, tried desperately to hold her bowels because he was so irritated every time she called that she was afraid to use her call light.Her case worker informed her that both local inpatient rehabilitation centers denied her admission because she didn't meet the criteria based on the neurologist's diagnosis (which we had not yet been updated on). Finally the neurologist came and did a super quick assessment. My sister could lift her left arm about three inches off the bed and her left leg about two inches, and still had almost no sensation. She still could not walk or bear weight at all. The neurologist said that they had ruled out all emergent causes and that it was probably a manifestation of conversion disorder and that it would go away in a few weeks. She will be discharged tomorrow and given a referral for home health.After the neurologist left, my sister started crying. She felt dismissed and judged and crazy and she started wondering if she was faking the whole thing. I reassured her that what she was feeling was real and that I believed her 100%. I called the patient advocate, but they were gone for the weekend. I contacted the house supervisor and requested either a different neurologist or a transfer to another hospital. She said she would talk to the neurologist to see what he was thinking. After they talked, they basically denied both requests, as well as a request for inpatient rehab or PT, and said she would still be discharged tomorrow.There are stairs that lead up to her mobile home. Her SO is not strong enough to assist her with the at home care she needs until home health comes through and she will clearly need significant around the clock care. She will not be adequately cared for at home.I'm not sure if we should just do the best we can until she can contact her regular neurologist on Monday (there is no after hours emergency line), or if we should check her out tonight and take her to an academic hospital for a second opinion and further testing. Our closest major cities are Shreveport, LA (1 hr), Little Rock, AR (2.5 hr), and Dallas, TX (2.75 hr). Any advice would be extremely helpful.This is what I know about her medical history:Hard of hearing Temporal lobe epilepsy (June 2021), last known seizure 6 months ago Cervicogenic headache due to neck/back spasms (June 8) Asthma Unstable SVT (frequent episodes for awhile, but no episodes in a few years) Fibromyalgia Left leg - possible femoral nerve entrapment (June 29) Rectal abscess surgery (Feb 8) ADHD Depression Anxiety PTSD Chronic/frequent laryngitis? (sore throat, loss of voice, and fever every two to four weeks for at least a year, not diagnosed) Upper back pain/vomiting when eating (April) Severe sleep apnea - hasn't received CPAP machine yet Urinary incontinence Non-alcoholic fatty liver disease Chronic rib pain - both sides, since teenager Enlarged spleen (Dec 2020) Hypertension Hyperlipidemia COVID (2020) PCOS Acid refluxThese are the medications I'm aware of:Ozempic (for weight loss) Metformin (for weight loss) Cymbalta Depakote Albuterol Gabapentin Oxybutynin Indomethacin Trelegy Singulair NexplanonShe rarely drinks alcohol - causes back and shoulder pain. She does not smoke cigarettes. She has her medical marijuana card for epilepsy, but rarely used it until this week, when she began smoking frequently to try to control the leg pain.Please let me know if you have any questions.