New ADEM Diagnosis 3/11/10

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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New ADEM Diagnosis 3/11/10

Postby Russell » Sat Mar 27, 2010 2:55 am

Well, I thought I would share my experience...

Some background information. I'm 24, and before this I was in perfect health with an almost untouchable immune system. I'm a warehouse manager for a major diagnostic laboratory. I live in Austin, TX.

How it started. I was working and lifted a kinda heavy box, it made my back feel a little weird, but no pain. The next day at work, my back really started to hurt, so I left to get it checked out at the ER. (My primary doctor wouldn't touch it, because it might be "work related") The ER gave me an X-Ray, Norco, and Valium and sent me on my way.

The next day I was sitting on the floor with my son and I couldn't get up. My wife took him to daycare, while throughout the day I laid in bed. This is the day my bladder also stopped to function. It was getting close to time to pick my son up, and I realized that I could barely move. I thought I was having a reaction to the combo of pain meds. I knew I had to go to the hospital at this point, but I left my cell phone in my wife's car. I hobbled as best as I could to the neighbors apartment (I live in a 2nd floor and she was on first). She let me use her phone to call and leave a message for my wife (she was teaching and her phone was off) and then called an ambulance.

The ambulance took me to a smaller hospital that didn't have a neurology department. I was getting worse, very rapidly. By the time I got through the MRIs here (about 7:00 PM) I lost the ability to speak, lost all feeling from my sternum down, couldn't move from my sternum down, numbness in the face and lips, ear splitting hearing, double vision, and my hands were blue. The internist decided to have me transferred to Seton Medical Center (main) close to downtown. I forgot to mention that I also called my wife's mom as the final form of communication I would make. My wife called her mom on her way home, per daily ritual, and her mom informed her of the situation. She picked our son up at about 8:00PM from daycare and got an emergency sitter.

Day 2

I was transferred at 4:00AM

Once I got there, they had me put in ICU. It gets fuzzy at this point, but based on what everyone recounted for me this is what I picked up from it. I spent the next 4 days in the ICU and had a team of 13 doctors working on me. The doctors ranged from Infectious Disease Specialists, Internists, and a large Neurology Team. I went through 4 MRIs, a Lumbar Puncture, and about every blood test that they could think of. At first, they were testing for alot of viruses and infections to rule them out. Everything came back negative, except for the lesions on my spine and a couple on my brain they got from the MRI. Day 2 in the ICU the neurologist decided that it was ADEM and started me on massive quantities of steroids. They had kicked around the idea of IVIG, but decided not to. I was started on 1000mg of IV steroids every 12 hours. The treatment started to work.

Day 6

I was moved to an intermediate observation room. Every day since steroids I have been recovering on a large scale. At this point I was able to move my legs a little. 2 days later, they moved me to the rehab hospital on the top floor. At rehab, I was able to regain most of my abilities. (Except bladder control, foley cath. was still in place). They discharged me home on 3/24/10 at cane level.


I saw a urologist today to remove the cath and see if my bladder is still "Neurogenic". I couldn't really urinate that well during the day, I had to do an I/O cat during lunch. After that, I was getting prepared to do it again in the evening, but while gloving up on the toilet seat to prepare for it I started to urinate. Now I can't stop urinating. :-o That's why I'm posting so late, my bladder has me up almost every hour to urinate a good quantity. I might have a urinary tract infection, but at least my bladder isn't "neurogenic." Right now, I'm on a steroid taper that goes through May 5th. I'm at 400mg a day now. My legs are still really swollen and numb feeling, but I can get around with a cane quite well now.

Thank ya'll for taking time to listen to my story.
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Re: New ADEM Diagnosis 3/11/10

Postby May » Sat Mar 27, 2010 7:29 am

Hi Russell: What you went through must have been really frightening. You were lucky your were diagnosed and treated so quickly. It sounds as though you have made enormous progress in two weeks. I hope you continue to improve. I was diagnosed with TM on 9/5/08 and when the catheter was removed, it took me a while to get full control of my bladder again. I would get the urge to go very suddenly and had to act on it immediately. A urinary tract infection sounds like a strong possibility in your case after using a cath for so long.
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Re: New ADEM Diagnosis 3/11/10

Postby Sew » Sat Mar 27, 2010 8:31 am


You went through a great deal and recovery so quickly.
Please make sure your urologist knows you now can't stop urinating.
If you do have a urinary tract infection it must be treated right away too.

Keep us posted on how you are doing too.
Heather in Calgary
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Re: New ADEM Diagnosis 3/11/10

Postby Russell » Sat Mar 27, 2010 9:32 am

Thank you for your replies.

I had a nurse come out today and collect a UA to see if I do have an infection. On the good side, my bladder went from producing 100 ml this morning to about 500 ml now. Urinating now takes a lot of concentration and I actually have to physically "push" it out. I wonder if that is one of the side effects of having a cath in for so long, or is it due to an infection?
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Re: New ADEM Diagnosis 3/11/10

Postby kanzaldi » Tue Mar 30, 2010 5:35 am

I also was Diagnosed with ADEM on this month. My symptoms started on 2/16/2010 and I spent 13 days in the hospital. My symptoms came on overnight and also moved rapidly. I also was in perfect health before all of this happened. This has been very difficult for me to deal with. I am very active 38 year old mother of 3 kids. This has left me very depressed and confused. Why this happeened? I am glad you are doing better. It seems like daily or every other day I feel a little bit better. I still have numbness and tingling in my feet and feel like my body is vibrating some times and am completly exhausted some days. I also still walk holding on to things but it is better every day. I also did 3 days of the iv steroids and then prednisone on a descending dose for about 3 weeks or so. I just finished my last dose of steroids. The recovery time for this makes me crazy. It is taking way to long!!! Did you happen to get either one of the flu shots this year? Also did your neurologist tell you no more flu shots? Hope you keep recovering quickly.
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Re: New ADEM Diagnosis 3/11/10

Postby marieke » Tue Mar 30, 2010 3:44 pm

The flu shot debate is really mixed. Some say it is ok others say not to. I have had the flu shot every year since I got TM and have not had any problems. I also got the H1N1 this year.

As for fatigue, this is normal. It takes a lot of energy for your body to recover. The fatigue is worst the first year. Gradually it will get better, but you need to listen to your body.
Marieke RN (TM at T1 March 18, 2004 @ age 28 )
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Re: New ADEM Diagnosis 3/11/10

Postby marieblond » Wed Mar 31, 2010 2:37 am

hi russell,

pls read the art. of rox conc. prof zamboni, because you describe that you have such a good immun system, the routes must be found in another place.

;;) marie
That which does not kill us makes us stronger.
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Re: New ADEM Diagnosis 3/11/10

Postby wilky50 » Wed Mar 31, 2010 3:45 am

Hi Russell,
My ADEM was pretty similar to yours, my bladder stopped first, then legs!
I now have my bladder back working, but not fully functioning as it should, at first I had trouble stopping it coming out, but over the weeks it has gradually got better to the point where I can retain hold a small amount inside my bladder to allow me to make it to the toilet, I am still conscious of how much I drink etc.
The walking around is hard work but has improved as well, I am not anywhere near the fitness level I was before this happened.
I have found great support from this group and it`s like an extended family.
Take care.

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