All I know about the month leading up to my diagnosis and virtually everything up to inpatient rehab is what has been told to me by my family and fiance. It all started, they say, with an intense headache accompanied by high fever (which I don't remember). What followed was a misdiagnosis of meningitis at the ER, hallucinations (confused by the nurses as an overdose of morphene, which was given to me for the pain), weakness to the point of paralysis and, finally, a catatonic state that lasted about a week. I was lucky to have a competent infectologist rule out meningitis early on and pass my case to neurologists, who finally diagnosed me with ADEM.
I'm wondering if anyone else who suffered from this had memory loss, as I did. Curiously, the only things I remember from my first month in the hospital seem to all be hallucinations (me smoking on the beach [I don't smoke], me stuck inside a very tight cage, me inside a crib...). Is this memory loss a coping mechanism or a common side effect of ADEM?
I spent 3 weeks in ICU, 1 month in the hospital and about a month and a half in inpatient rehab. It took about 2 more months until I "graduated" from outpatient rehab. 6 months, exactly, in total. Though I still have a neurogenic bladder and some minor balance problems, my life is back to "normal." I can jump, run, cook and even drive short distances.
Looking forward to hearing if anyone shares my experience(s).