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.

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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

My husband (55) was diagnosed with ADEM in 2018. What I first noticed was his leg dragged slightly as he walked. He said he “hurt his back” but didn’t remember how. That went on for (3) days. I was concerned he may have had a mild stroke. He returned home from work early complaining about not being able to remove the starter from his truck. He said he was very confused and suggested we go to the ER. At the ER his condition rapidly became worse and very obvious that he was having difficulty speaking and understanding. He even walked away from the hospital in a gown and IV. I found him staggering towards the highway. I brought him back to the ER. The MRI showed a large mass in his brain. I was told possibly a tumor, cancer or inflammation. He was admitted and transferred to another hospital better equipped for neurological issues. I stayed by his bed side watching him deteriorate. Each new day brought another symptom. He could not see, or speak clearly. He could not walk or sit up straight. He forgot the names of his children and himself. I fed him his meals. He lost control of his bowls and had to wear a diaper. I was certain he was going to die. I cried daily as I sat in my car outside the hospital praying for a miracle. They did a Brain Biopsy but were unable to diagnose. About (2) months later a Colorado state lab confirmed ADEM as the condition. It’s been crazy, literally. It was (5) months of determination and therapy. He is unable to get his hands to work with his brain but little by little he finishes small projects and continues to amaze me. His speech is improving daily and his memory is better than mine now. His short term not so good. He struggles with his hearing and had to get prescription eye glasses. Hes become in tune with his sensitive/emotional side. He actually cries tears. We are very lucky and blessed to be where we are today. I do worry about a relapse. It seems most of the adem survivors suffer a horrible relapse later on. Thank you all for your support and sharing.

Hey Patchesgal,

I was diagnosed with ADEM in Jan 2017 at age 35. We all have long stories on how our diagnosis came about, but your comment about relapses intrigued me. I was told by a regarded neurologist in Dallas (Dr. Benjamin Greenberg) that I would most likely have a relapse in the next 5 years.

After very little help on how to prevent this relapse (to MS or other degenerative health issues), I went on a different path towards Functional Medicine.

I will keep the first part of my story short - as there is so much to say during this journey - and tell you that I no longer have fears of regression or relapse, and I feel the best I have felt in my 38 years. I had been unknowingly been suffering for years with underlying conditions that normal blood tests had not been able to diagnose.

I am here to give you hope in that there is a reason why your husband got ADEM, and that there are options to not only stop the regression, but repair the damage that has been done.

Matt - Oklahoma City

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Hey Grim - Just got on this forum and couldn’t help but chuckle at this comment of yours:

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)

Sounds about right! All lovely options! I was sent away from the ER 4 times - even though I had to be put in a wheelchair after Day 2, before I went to another hospital where they diagnosed me with ADEM and put me on steroids within about 30 hours - time is of the essence when you’ve got bulging lesions (inflammation) popping up on your brain and spinal cord! More to come as I read all of your stories.

On a side note, are you still interested in having 32 kids?

Matt - Oklahoma City

Yo yo yo, Carbymatt, glad you enjoyed my dark humor.

Your scenario seems close to mine but the steroids didn’t take the first time, even though it was intravenous.

Due to the fact that i am back in my “right” mind i am also back into my old thought process. So, i do not want minions. There are too many factors to list and the risk is not worth the reward.

Hello! My 2.5 year old had ADEM and seems much better now that we’re done with the steroid treatment. However, I’m taking him to a functional med doctor here for more answers and support. What was your experience? Do you think I could email you about this? Thanks so much!

Hiya I l got diagnosed last year April 2019… regarding a relapse of ADEM i was told there is a very slim chance of it recurring. But i was very lucky as my only symptom was a migraine type headache as they believe it came from sinusitis I had been fighting to get rid of for about a month.

Hi! I got ADEM in February 2019, 9 days after my 30th birthday. I got paralyzed from the chest down and had dubble vision, a massive headache and my memory is kinda blurry from the day I went to the hospital by an ambulance.
At the hospital they first did a CT of my brain because the though I ha meningitis but it came back clear. They then did a lumbar punctuation and I had I high whiteblood count, red blood cells, glucose and some more stuff in my spinal fluid. They then did an MRI of my brain and spinal cord and found lessions that was consistent with the lessions you get when you have ADEM according to the radiology doctors in Sidney.
I then got IVIG, cortisone, antibiotics and antiviral medications through IV.
I haven’t fully recovered yet but I’m making progress.