Acute Disseminated Encephalomyelitis (ADEM) Support Group

How were people diagnosed

I have had ADEM for the last 6 months. I started out with sinusitis and headaches. one day I fainted and that’s what made me go to A&E.
When I first had the CT and MRI got told straight away it was a tumor!! then decided a LP and got tested for high white count so was on anclavir as well as steroids. after the 2 weeks had another MRI which showed swelling and lesions had reduced a lot and ruled out all tumors apart from lymphoma. had a second LP which only showed up no abnormal cells. so diagnosed me with ADEM.

was just seeing if anyone else had the same situations?

So as good chunks of stupidity come back to me, here is how i found out i had ADEM… I had vision issues, 2 walk-in doctors said i had a sinus infection… how they came up with that i will never know as i continued to vape out of and breath with my nose just fine. I then saw a optical specialist who saw some swelling somewhere, which ruled out my sinus. So i had to see a neurology specialist who gave me 3 options. 1, Aggressive MS (AKA you are going to die now). 2, Rare Brain Cancer (AKA you are going to die now). 3, ADEM… (you may die, but you may not). He sent me out to get an IV (i cant remember the stuff) done every other day for a week… felt good for 2 days, then i got lethargic. Then i woke up in a hospital, Boom, They now knew i had ADEM. i have no memory of anything in between. Not the tubes, the tests, me telling my family off when i wanted to take a piss and collapsing after i was done thus hitting my head on the toilet or me telling my then girlfriend that i wanted 32 Kids…

Grim,
How are you doing at this point? Are things back to some kind of normal?

Lynn

Lynn,

I’m still alive… take it as both a blessing and a curse. Kind of like i drank Unicorn blood.

But hey, if anyone reads this, maybe they will get some hope.

I got rid of all 27 of my brain lesions, brain looks healthy and normal.
Lost all the weight i gained from being on Prednisone (down from 320 to 235).
No more Type 2 Diabetes.
No more muscle wasting.
That’s all. No big thing.

1 Like

Sounds like you’ve come a long way. I remember when I went in the hospital, I walked in wearing my jeans and next morning morning, the only thing that fit was sweat pants. That fast…prednisone is wonderful!

Do you have any residuals?

Nothing physical, all mental. That is the only thing i have left to conquer.

Well, I can share, most of us have some of that. I am more emotional, I only see things as black and white now, not shades of grey. Where I used to handle 8 things at a time, now I need to complete things one at a time. My words tend to vanish when I’m speaking. My husband says I am different, but I am very livable. Give yourself a break, things may not be exactly as they were before.

Hi Grim
Thats great to hear that you have made good recovery. My husband is still struggling with brain issues post ADEM 1.5 years. He is still not able to work.Are you able to join back work and take care of your finances ?

Thanks
Nidhi

Hi NidhiJ,

i found a part time job as soon as i could and then went full time a month later. my debts are all paid off and have a considerable savings (because i really lost all drive for happiness and felt no dopamine) So he can if he is willing. The big thing is willing. He isn’t stuck with a family that holds him back, so it is his fears and pain he must overcome. I hope he finds the courage to fight, hard and with no doubts that he will be better.

That’s exactly what iv got left to conquer!!!

Hi @Grim, your recovery story is fantastic. Thought you may be a resource to one of our new members @Graham, who has also recovered from ADEM, but admits to the presence of some slight symptoms.

And @Graham, the floor is yours to share your story ! And welcome to our community by the way :slight_smile:

-Arjuna from ModSupport

Its been 5 years for me I never received an “official” diagnosis.
My neurologist just said it was “MOST LIKELY” ADEM because I have no new lesions.

Still bothers me to have never received a definite answer but I’m learning to just live with it haha…

Hi @Princess, I am sorry to hear you have yet to receive a conclusive diagnosis, that can be truly frustrating, and many on here resonate with you on that. Looking at your profile, I am understanding that you still have not fully recovered- like several others on here. What kinds of symptoms still persist for you @Princess?

-Arjuna