More Info?!

involves demyelination in the spinal cord and in the brain. The demyelination in the brain is different than a demyelinating attack from MS; the lesions are scattered and do not appear in the same pattern as those from an MS attack.

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More Info?!

Postby nikkimariep » Sun Jan 23, 2011 9:39 am

My name is Nichole and im a 26 year old mother of 2 young children. I live in Northern NJ and was diagnosed with ADEM in June 2005, 9 days after the birth of my first son. I presented to the ER with 104.5 fever, severe headache, and a stiff neck. I refused a spinal tap since i had a really bad one as a kid. I was admitted to the hospital with suspicion of Meningitis. The doc said fluids and rest and the weekend in the hospital and id be fine... within a day or so i was going downhill. My family and friends said it was like the lights were on but no1 was home. I could barely talk, when i did i didnt make any sense. I couldnt walk or feed myself and at some point i was unable to urinate on my own. The infectious disease doc as well as my primary said this was all POSTPARTUM DEPRESSION!!! I spent the next few days unable to walk, talk clearly, urinate, feed myself... etc... i dont remember most of my hospitalization with the exception of a few things here or there. Finally after contacting another family members neurologist in NYC and him recommending an MRA vs MRI and my aunt going to the hospital administrators office and raising hell, they brought in the Neurologist. MY LUCKY BREAK! Thankfully one of the on call Neuros had written a paper in med school on ADEM in children. Had it not been for him who knows where id be! In the end lots of steroids and a 2 week stay in a rehabilitation center and im up and running. I have almost completely lost my memory tho, which at 26 is quite difficult. I cannot recall most childhood/HS memories. I also missed the first 6 weeks of my sons life. I guess what i really came on here for was to interact with other people who understand my frustrations. I have had follow up MRIs and neuro visits. But everytime i go he asks why im there? Apparently they felt i wasnt going to live and if i did id never walk again... i proved them all wrong and within 8 months i was back to work in the same field i had been previously as an EMT saving others :) However my neuro seems to think im a miracle case and have no need for repeat MRIs. Im frustrated because nobody seems to understand that although im here and im alive my continuing symptoms are extremely difficult for me to deal with but nobody seems to care because they did their job and saved my life! Nobody has any explanation for the urinary issues (i was unable to urinate and stayed catheterized during hospital and rehab stay and was sent home with it, i took several rounds of medication and eventually was able to urinate on my own, however i still sometimes have difficulty as well as problems holding it when not in the immediate vicinity of a bathroom) Does anyone have any further info about the urinary issues? I also have severe issues with memory and concentration. I know thats the worst possible thing for me and i really cant fix it. Has anyone ever found a doctor who specialized or had further info about ADEM? I think its such a rare occurence that there is not enough research or information available to those of us who had suffered from it. I also fear the future diagnosis of MS, which i was told was an almost certain diagnosis someday... Anyone who can offer some more info or just can understand where im coming from please let me know. Thanks for reading and i hope everyone stays well! :)
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Re: More Info?!

Postby Shirley » Mon Jan 31, 2011 12:10 am

Hi Nikki,
I too retain urine, I was a nurse in another life, so got used to hanging on for hours. Of course when TM hit me 7yrs ago, I couldn't empty it properly. I wasn't catherterized. After having numerous infections, I was sent to a Urologist who did a bladder scan before and after voiding. I retained 300mls 1st time round. I went back 6mthly and managed to reduce it down to 50mls. He also put me on a low dose antibiotic, which I'm still on today.
I also saw a Continence nurse at Urology clinic.
I hope I have answered some of your questions Nikki. Please keep posting here.
Keep well


TM since 2003 - 90% recovered
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Re: More Info?!

Postby bally » Thu May 12, 2011 9:21 am

Hi. I couldn't hold my urine i found it hard to control. It got much better over the months when I came out of hospital. I feel a lucky one though after reading everyone else's stories. I get headaches but still have good sight and physically I'm ok. I do get temper Probs quite bad and I never used to be this bad. I can't help it.
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