Acute Disseminating Enchephalomyelitis (ADEM) After Flu Vaccination

by Lori
(Arizona, USA)

In October 2003, I received a flu shot. Ten days later, my eye-sight in my right eye went from 20/20 to 20/100. I felt extremely fatigued, the right side of my body hurt, I had uncontrollable shaking, and my right eye felt like someone had punched me.

I went to the hospital ER and had an MRI and spinal tap done. My MRI showed some small lesions on my brain stem (but they could not conclusively connect my lesions to the flu shot).

I went on to see a specialist at Barrows for possible Multiple Sclerosis (MS). I had MRIs for three years.

Finally, I was released from the Multiple Sclerosis diagnosis, and was labeled as having ADEM (Acute Disseminating Enchephalomyelitis). The ADEM stemmed from some "unknown" virus or vaccination.

I am in pain every day. I haven't gotten any better, but at least I haven't gotten any worse!

A lot of people don't believe I have anything wrong with me (especially the doctors) who saw me in the early stages.

I am almost constantly fatigued, have pain in my right eye (one lesion is on my optic nerve),and have had to stop teaching, although I do substitute teach occasionally.

My life has changed completely. Luckily, my kids are now 9 and 13, so they do a lot for themselves. My husband has been a rock, and is always there for me. My parents don't really believe I have anything "wrong" with me, and are always questioning why I keep complaining. That makes it hard, and makes me very mad and sad.

My advice is to always read the waiver you have to sign before you get a flu shot! And know the contents! I know I got Acute Disseminating Enchephalomyelitis from the flu vaccination in October of 2003 (in the U.S.)

For those of you struggling with a silent illness, hold on, help is on the way. SleepyDust helps me get through every day.

Be good to yourself, believe you can get better, laugh and take it one day at a time!

Best wishes

Lori