50 Year Old M with ADEM - Now doing quite well

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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50 Year Old M with ADEM - Now doing quite well

Postby rore10 » Tue Sep 22, 2009 1:09 pm

On Memorial Day I was suddenly hit with severe headaches and 103-104F temperature (never
been sick besides the common cold). I remember getting into the car to be driven to emerg
and woke up 7 days later in the ICU. Ultimately, the diagnosis was ADEM - large number of
large lesions in the myelin brain covering showed clearly in the MRIs. I'm told I underwent
seizures and had every virus test under the sun (all negative). I was put under ice packs to
get the temperature down. Four days after admission and once ADEM was confirmed, I was
given IVIG. That saved the day and the temperature broke. I spent another
week in the hospital after the ICU. I was fortunate enough to have an amazing disease
specialist (Dr. Robert Zajac in San Antonio) and Neurologist (Dr. Restrepo) on my case.
I started on prednisone (100 mg) (+ other drugs) and started weaning a few months ago.
I hope to be off it by early next year. This caused me to require insulin shots and sleeping
pills each day - but that is decreasing now. Physically - things are progressing very well. I
used a walker for the first few weeks. A large amount of initial shakiness, unbalanced walking
and numbness has decreased to almost nothing now (3.5 months). I have just started
going to the gym each day to slowly rebuild the muscle that has been lost.
Cognitive tests at the neurologist's office have also been fine.
This incident has caused me to eat all the right foods (to help rebuild the myelin) and to
live a very healthy lifestyle. The latest MRI showed a SMALL number of SMALL lesions - the
doctors are amazed at the recovery so far...
Just thought I'd throw out this experience which so far has a good end result....
Last edited by rore10 on Tue Oct 13, 2009 12:22 pm, edited 1 time in total.
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Re: 50 Year Old M with ADEM - Now doing quite well

Postby marieblond » Wed Sep 23, 2009 12:41 am

it is fine to read that there are some docs in world who find out the reason so fast... my first docs did not so. I was at the wrong place at the wrong time...

my recovery started without any medicine though my local inflammation went over about10 cm... but i am convinced it could be better with prednison in the initial phase.

pls. leave me informed on your special food. perhaps I can do here something for a better feeling. I got a bad "paunch", the other part is rather slim.... so I look like a big

sprite ..................... 8-| :)
That which does not kill us makes us stronger.
Friedrich Nietzsche
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Re: 50 Year Old M with ADEM - Now doing quite well

Postby tkeys » Sat Sep 26, 2009 5:22 pm

Congrats on your recovery so far! I was diagnosed Feb 2009. Initially, I was very ill and spent 3 weeks in the hospital doing high dose steroids and inpatient rehab to re-learn to walk and all th everyday things. I had trouble controlling a rolling walking. It took me about 4 months to get steady on my feet. Now I can run, and basically do whatever I want. Minus the fatigue and some headaches, I have had great success. So for those who are still struggling, it will get better, and it can get back to normal just keep working hard. Not all cases of ADEM will be a lifelong battle, just push through recovery. For all those who continue to recover, never give up! This crazy disease can get better...:) God bless!
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Re: 50 Year Old M with ADEM - Now doing quite well

Postby Hev » Sun Sep 27, 2009 12:35 pm

Hi Marie,

Like you I didn't have any treatment for the inflammation and think if I had I would have made a better recovery.

I struggle to keep my weight down - I eat a healthy diet and manage to maintain it at the moment. I need to exercise more but when I have the time I am usually tired and have painful feet from all the other things that need to be done!! I probably need more will power. :-?

It only seems to get harder as time goes on and as I get older....

Take care,

Heather :ymhug:
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Re: 50 Year Old M with ADEM - Now doing quite well

Postby Shirley » Tue Sep 29, 2009 11:51 pm

Glad to hear I'm not the only one who struggles with exercise. I'm so tired for 4 days a week, I catch up with housework, office work and seeing the Grandies on the 3 days I feel 'normal'.
Keep well


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Re: 50 Year Old M with ADEM - Now doing quite well

Postby noah » Sun Feb 28, 2010 6:06 pm

i contracted a.d.e.m in aug 2008 whilst on a work trip to vietnam.Ihave still not recovered properly and was wondering if you know of anyone with relapses,i live in Australia and it is very uncommon in adults here ,i was 41 when it happened.

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Re: 50 Year Old M with ADEM - Now doing quite well

Postby nannann » Wed Nov 17, 2010 5:30 am

What a relief to find someone in the same age bracket as myself who has experience of ADEM.
I'm 57 and back in the last week in April 2010 found was unable to walk across office in a straight line..kept veering to the left and then couldn't judge the depth of tread on stairs and felt I was falling forwards.I saw GP who diagnosed Inner ear infection.I tried to get out of bed on 4 May and fell over to the left.My left hand and foot felt very strange and the sensations were all wrong.I tried to phone for help but couldnot use left hand to look up numbers whilst holding phone in right hand.Could only reember one number..my son's living ove 200 miles away.His wife answered and realised that something seriously wrong as my speech had been badly affected.To cut a long story short..paramedics came and rushed me to A+E where intitially I was told I'd suffered 2 possibly 3 strokes.I was admitted..by which time my daughter had arrived from 55 miles away and I was seen by 2 other doctors and sent for Cat and Mri scans.We were then told that it was likely I had brain tumour and they needed to look for others so then followed more scans/x-rays/mammograms and ultra sound.Things were looking very bleak for a time but then I was transferred to The Walton Neurological Centre for more tests and met my consultant who told me that I have ADEM.In total I was in one hospital or another for 8 weeks.

I 'm much better than I was but am still very shakey and wobbly and need to use a stick out doors.I have a Delta frame but try not to use it.I feel off balance if someone passes me from behind and I have to stop and steady myself.Ihave to concentrate hard to do simple tasks and am easily distracted and then forget that I was doing something.I now suffer from Motion sickness but at least it's not there all the time like it was ...I hate having to travel anywhere now.I also find myself becoming very anxious over the silliest of things.I Have to psyche myself up to walk outside and I live in a small ,friendly Welsh village so I'm being irrational.Also I am nervous trying to cross the road as I no longer am sure of speed and distance of any traffic

My left and and foot still don't seem to have normal sensation and my left hand sometimes is very clumsy.I could go on.I had an MRI scan last week and am waiting to see my neurology consultant in Feb 2011.I was originally tod 1 to 6 months for things to return to normal but now am being told that it is very early days.It's all so frustrating.Looks like I may lose my job and I hate not being able to even walk my dog.Thank God for really great friends
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