I was told by doctors my boyfriend has "Fulminant ADEM", a severe case. He has been in a medically induced coma for about 12 days to keep his brain from swelling. I wrote most of his story on another discussion but it does not look like anyone's else had brain swelling like him or had to be in a coma this long. Anyone's story would be appreciated.
Emily, I just wrote to you on another post, but I did hear of one case in an adult, where they thought it was ADEM and it turned out that some sort of cancer was causing the demyelination process. After they found the cancer, they started treating with chemo, and the patient got better. Bring that up to the docs. It may be a long shot, but you never know….
Yes, I actually did a ton of research last night bc what originally brought us into the ER was his kidneys, he was having pain and urinating blood & that day he was diagnosed with Polycystic Kidney disease (it does runs in his family),a kidney infection, 2 bleeding cysts and the ER doctor said he "thinks he saw a lodged kidney stone". By the next day he was acting strange, off balance, memory loss etc just kept progressing. At first they said the ADEM was not related to the kidney infection. However when I took in my research/questions today a doctor told me the kidney infection could have caused this. You bring up a very good point, I think I am going to ask them to look into his kidney scan again to see if it really was a stone or something more serious. Thank you so very much.
Sunshine said:
Emily, I just wrote to you on another post, but I did hear of one case in an adult, where they thought it was ADEM and it turned out that some sort of cancer was causing the demyelination process. After they found the cancer, they started treating with chemo, and the patient got better. Bring that up to the docs. It may be a long shot, but you never know….
ADEM can be caused by anything which stimulates the immune system, since it is the result of antibodies turning on the myelin. No surprise that they initially stated the two were not related. I hope Emily, that your gentleman's doctors are seeking and getting more opinions since this is such a rare condition. It took me a long time to recover and I was never in a coma. I still have problems 5.5 years out. My initial diagnosis was a grade 3 astrocytoma, a brain tumor in the medulla oblongata. Utterly inoperable and inevitably fatal. Thank heavens my first neurologist was wrong but it did lead to a 4 month delay in treatment. You are his best advocate and I strongly encourage you to study and read everything you can.
Best
Deborah