Acute Disseminated Encephalomyelitis (ADEM) Support Group

How were people diagnosed

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.

MY LONG AND SOMEWHAT DETAILED STORY
I was diagnosed in April 2018, just as we were moving back to Northern CA from NY, at age 64. My husband and (adult) kids realized something was wrong with me, but kept it among themselves because you don’t tell me ANYTHING. I’m kinda bossy, and always right.

In Feb 2018, I traveled to Uruguay with some friends to take a woodworking class, and then on to Argentina. I had done woodworking before, and was nominally skilled. But once class started, I couldn’t do anything! It was awful. I slept a lot, and finally my best friend sent me an email saying “you bow out of things when we travel, but this is ridiculous!” She was right. I slept and slept and slept, I had little interest in anything. I loved Buenos Aires, I think. I can’t really remember.

Back in NY, my family noticed I was slowing down, sleeping a lot, losing my memory (which had always been a source of pride to me), had developed a minor facial palsy (crooked smile), and was slurring my speech. No one told me though, they just worried amongst themselves.

One of our kids lives here about 45 mins away from our new home in Sonoma. My husband was still in NY. My arrival in CA on April 18 was a nightmare. I flew in to SFO, and couldn’t keep my mind together. I managed to picked up our car from a lot, and drove to Target to pick up a comforter. While at Target, I somehow managed to lose (1) my passport, (2) a credit card, (3) my mind. I didn’t know any of this at the time. I drove to West County Sonoma, and could not find the key to our house, which our realtor had left for us. My calls went unanswered because it was midnight in CA, 3AM in NY. I couldn’t get in. I decided to look for a hotel, and drove to our local airport, Santa Rosa, and found a hotel. That’s where I realized I only had one form of official ID, and the guy wouldn’t give me a room without 2 forms. I finally cried enough that he let me have a room. Where I lost (1) my iWatch, and (2) a bracelet.

I got a call from my son who told me he was at the house, and said we should go to breakfast. I drove home, put my stuff inside, and we went to my favorite restaurant in Guerneville. After we ate, he told me (per my husband) I had two options: [A] he could take me to the hospital, or [B] we could call an ambulance. He took me to the Hospital.

Once there, I was put through two protocols, one for stroke and one for MS. The MS protocol included an MRI which showed a LOT of lesions on my brain. My husband arrived the night of the 19th. So began the ADEM process. I was in the hospital, Sutter Santa Rosa, for five days.I had more tests than I ever thought possible, though I got over my lifelong fear of needles. Their Lumbar Puncture people were completely incompetent, making it the scariest and most painful experience of my life.

I was very fortunate to have two of the world’s best neurologists: Dr. Nancy Nealon at Weill Cornell in NYC, and Dr. Riley Bove at UCSF. Both specialize in treating ADEM and MS. I am so grateful for both. MRIs and Lumbar Punctures and Bloodwork are now all clear. WHEW!

I learned that my balance was off. No kidding, right? Also, my memory. I had to rely on my husband and daughter to fill in the blanks of things I couldn’t remember almost immediately after being told. It was an incredibly frightening time. My biggest anxiety came from the “not knowing.” I knew that I had ADEM, but I didn’t know what that meant for my life. Would it happen again? Would it get worse? Would I get worse? How completely would my life change? I was terrified of the unknown. In many ways I still am.

BTW, I also was given a battery of neurological tests - Yup, the same cognitive tests that Trump took (among others). It was the only time I’ve ever been able to relate to him. I wasn’t given a pass/fail grade though, I was given results. I had lost a part of my executive function abilities, which had been strong. I also lost some straight up recall ability. I knew this, though. Sometimes you just know what’s missing.

I also lost a bit of physical balance. Even today, when standing, if I turn sharply to my left, I nearly fall over or get a sense of dizziness that I need to take hold of. I haven’t fallen YET, so at least that’s good. In all fairness, some of this could be age-related, but I think most of it is ADEM leftovers.

The worst thing for me was and is the loss of my handwriting, which was my pride and joy. Yeah, I know, I’m too full of pride. I had a small journal book (Journal of No F*&^cks) in which I wrote some notes. Not only were they illegible, but evidently I’d also written some notes in French … which I don’t speak (except for some HS French in the 70’s). It was quite strange, to say the least. I still can’t decipher what I’d written.

Fortunately, or un-, I can’t remember a great many of the details of the time from Feb-June of 2018. What stayed with me was and is the fear of the great unknown, but here I stand as a testament to surviving it.

Sorry, not sorry, for the length of this. I hope someone will see something in here that they can relate to, and won’t feel so frightened or alone. I know that Ben’s Friends ADEM site has been a gift to me.

Stay well, wash your hands, and WEAR YOUR MASK.

XOXO

Rita

Rita,
Hi I’m Lynn. I can relate to a lot of what you wrote today. However, I am in my car and running errands. I will write back this afternoon. No fear, our site was a life saver for me too.! Hang in there…we’re here for you!!!:sunglasses::mask::+1:

Rita,
I was not diagnosed for one month and a radiologist my husband worked with diagnosed me, because he had seen one case of ADEM when he was in medical school umpteen years ago. We then went to Vanderbilt, where the smart guys are. After 6 hours in the ER, they stated they had no idea what was wrong with me. They sort of settled on what the radiologist determined. Point is very few doctors know about ADEM. If you found doctors that do, you are very lucky.

Most of my initial symptoms started to correct after 4 1/2 days in the hospital on steroids. The worst was that I lost all function of my hands. I had to learn to use them again. Most of us are left with some type of disability. I can use my hands, but my fine motor skills in them kinda stink. My personality is somewhat different. Before I saw in gray shades, now everything is black and white. Before I could handle 8 things at a time…not anymore. I am also more sensitive emotionally. But…compared to the day of diagnosis, I am great!!!

We can and do get better, however, it can be a long process. Frustration comes along with it and it is not your friend. Take one day at a time. Celebrate each and every little improvement. How are you compared to yesterday, last week, last month and when you were diagnosed. We are here for questions, comments and when you just want to vent. There is a lot of experiences and sharing here. You can talk to me or the whole community! There is a lot to read on the site, if you wish. Take care of yourself and stay in contact.

Lynn