Acute Disseminated Encephalomyelitis (ADEM) Support Group

Memory loss.. of everything but the hallucinations


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).


Memory loss is normal for me. I had an ADEM 21 months ago an large parts of my life's memories are not accessible.I rely on my memory at work and now large portions of it are gone.


thanks bchap.

ADEM is such a bizarre disease. It really does alter your life, completely. Luckily, I only lost memories from the month prior to going to the hospital and the first 2 months at the hospital. Do you mean that you lost some long term memories?

how is your working memory? At first mine wasn't as sharp as before, but there is a site called lumosity for online cognitive therapy that has really worked for me. Perhaps you should give it a try.

I was also starting my own business before getting sick and have had difficulties remembering where I left off. It's very difficult to explain this to providers and I always have a feeling that they might not be believing my story. It's very difficult.

May I ask, how old were you when ADEM hit?


I play lumosity every day. It is my working memory that has been destroyed. I am 52 now I was 50 when this hit. If I get an idea I only have about 30 seconds to write it down or it is lost forever. I bring small pocket size notebooks with me at all times.