Acute Disseminated Encephalomyelitis (ADEM) Support Group

Long lead up


I wonder if anyone else had a months long lead up to the acute symptoms? In hindsight, my illness began almost 5 months before the acute stage when I passed out (stone cold sober) at a rock concert. I had been standing for nearly 2 hours when I had a clear thought - I am going down. A kind Russian emigre kept me form hitting the floor.

The following months found my right hand growing cold to the touch. I developed an odd tilt to my shoulders as one kept rising higher than another. Approximately one month prior to the acute phase, I developed right leg pain similar to the sciatica I had had during my last pregnancy. A short dose of cortisone seemed to resolve the leg pain.

Then WHAM> The flu like onslaught two weeks after ending that predisone dose. Followed by 5 months of incorrect diagnosis and marginal therapies - one after another, until a new neurologist after I left my husband and moved into an informal assisted care situation.

Thankfully I have ONLY the ongoing severe pain along the 10th cranial nerve, the inability to remain standing still for any period of time due to damage to the vagus nerve, and reduced sensation on the right side of my body. Oh yeah, the atrial fibrillation from the pneumonia contracted during the prolonged course of prednisone after the second diagnosis of a less deadly form of brain tumor in the medulla oblongata. I guess I am angry with the first team of neurologists who were incensed when I suggested a second opinion.