24yr old female. 5'8, 120 lbs. History of MVA 2003 causing peripheral neuropathy, traveled to El Salvadore in 2008 resulting in severe undiagnosed infection-symptoms resolved with Flagil; past surgeries- appendectomy (2001), R hip scope/osteoplasty (2006), gallbladder removed/exploratory lap (2008-looking for infection following El Salvador), tonsillectomy, septoplasty, and sinuses surgically cleaned (Feb 2010). 1.4 cm Pineal Cyst found in 2008, has not shown significant growth and is not presenting as damaging or blocking anything on my MRIs.
About a year ago, I had a flu-like illness (fever, chills, body aches) and I went to an Urgent Care Center and was given TamiFLU, although I was not swabbed for the flu. The next week I woke up to get ready for work, but when I stood up I fell straight to the ground from severe dizziness. My vision seemed blurry and double, I had a low grade fever (100.3F), nausea, and a debilitating headache erupted. A year later, I am on medical leave from work due to a progression of symptoms of the following:
-Headache (pressure behind eyes, back of head)-feels very different than the occassional migraine I have gotten
-Visual problems (episodes of double vision, blurry vision, pain with eye movement)
-Nausea and vomitting (very frequent)
-Fainting (both after standing, after having been standing for a period of time, and sitting down)
-Loss of memory
-Problems with cognition (trouble finding correct words/forming sentences, difficulty learning new things, etc...)
-Persistant low grade fever (ranging from 99.5 F-101 F) -bloodwork is always normal
-Extreme joint pain (no swelling or redness)
-Overall "sicky" feeling
I have also had enormous trouble with sleep-which has just been diagnosed as Narcolepsy with Cataplexy, which could explain some of the fainting spells.
I have had 5 lumbar punctures, which have indicated elevated incracranial pressure (ranging from 19-24 opening pressure), but the CSF fluid all came back clean-0 cell count in the fluid). The headache was temporarily relieved following the spinal taps, but only for about 24 hrs. After seeing 5 neurologists and neurosurgeons, the majority believe it is NOT pseudotumor and are baffled at what could be causing this. I have also seen numerous neuro-ophthamologists and infectious disease specialists.
I am thrilled to have figured out what is causing some of the symptoms, but still haven't gotten any answers for the majority of the symptoms. Are there any conditions that tend to present in patients with narcolepsy? What is the diagnosis for POTS or chronic fatigue syndrome? Those seem to embody a lot of my symptoms. I am desperate to go back to work and get my life back!