Acute Disseminated Encephalomyelitis (ADEM) Support Group

About ADEM

Hi Laura,

It's nice to see that people wanna work to get the attention of this illness that it needs. Thank you.

1. Mark G.

2. I'm 24 now (turning 25 this year) - ADEM diagnosed in the summer of 2013 (age at that point: 21)

3. I had for more than half a year troubles with my throath. Eventually it got infected a few times.The doctors said that probably this infection "went up" to my brains causing ADEM. And/or because of eating Mozzarella cheese somewhere in the last weeks. And/or because of swimming in the canal (unclean) -> this was maybe a bad desicion

Actual cause: UNKNOWN

4. I recovered "completely". I'm working as a Project Leader for the moment.

5. As I said "completely". Some things start to happen. I have lot's of troubles with my memory and hearing these last months. Apart from that, I also have many moodswitches since I've been diagnosed. From depression to personalitychanges.

Thanks for putting time and effort in this,

Mark

Sorry, in my post "also" got turned into "Maldonado"!

Phoebe Starling said:

Hello Laura,

JANE W.
66 YO, onset 2/29/16. Spontaneous ADEM. (deranged immune system) Eight days in hospital for solu-medrol and prednisone taper. Also have had type 1 diabetes x53 years,Maldonado an auto immune disease I believe.

I'm retired but was active in volunteer work which I hope to get back to soon.

I have problems with spasticity for which I take two medications. These can be severe spells and I am also weak and uncoordinated so I'm going to PT now.

Thank you very much for collecting data!

1. FIRST NAME and LAST INITIAL: Andi S.

2. Age and year of on-set of ADEM: 37, 2015

3. If you know, did it come on because of an infection or a shot (or unknown)? Possibly due to a viral illness.

4. Are you able to resume your previous occupation, if so part-time or full-time? Not yet

5. Anything else you'd like to add (physical challenges, mental challenges, emotional, etc.) Physical- complains of feeling stiff and unable to move as freely as before; Emotional- increase in impulsive behavior and emotional instability, easily angered.

Hi Mark
What were your initial symptoms or how bad you were when down ? Were your mental status and abilities also affected by this disease.
My husband is also down with ADEM . After 3 months he has recovered physically though incontinence is still a lingering issue but his mental status and abilities are highly effected though his reading and memory is fine but he behaves strangely many times.
Please tell me how long it took for you to recover.

Thanks
Nidhi

Just incase this information is still being gathered:

  1. FIRST NAME and LAST INITIAL: Vince L

  2. Age and year of on-set of ADEM : 30, 2017

  3. If you know, did it come on because of an infection or a shot (or unknown)?: Hypothesized as a result of the Flu. I do not get shots for that. Additionally i did not have any shots for the 5 years prior.

  4. Are you able to resume your previous occupation, if so part-time or full-time?: No, but i have proven to myself that i am able to do full- time work.

  5. Anything else you’d like to add (physical challenges, mental challenges, emotional, etc.): I do believe most of my persistent issues are because of my medication. Large dosage of Prednisone still being weaned off slowly.

Thank you so much for your info. I’m still collecting data in the hopes of someone wanting it one day.

Laura

Hi William C
40 m
I got very sick in may 2016 . Started with uncontrollable violent hiccups 15 hrs a day for about 25 days . Along with nausea, numbness, vomiting, inability to walk or stand … then a head pressure came on very strong to where i could not touch my hair without being in extreme pain … so i ask my gp to do a head mri and sure enough there was an anomaly in my brain stem.

3 months later ,after several hospital and doctor visits later. My neurologist diagnosed me with ADEM.
This is after being told i had an
inoperable brain tumor -false,
NMO-false,
MS- false…

After 6 mths of various medications that didnt help. I demanded a steroid treatment. So i did a 5 day iv treament and within 2 weeks my brain stem lesion shrunk from 2.5 cm to less than 3mm.

The aftermath… -
I had a weight gain of 72 lbs in 2 months .
This being over 2 years ago- i still have confusion ,memory loss. speech impairment, stiffness numbness pins and needles thoughout my body.

ADEM at 37 years old im told is rare… idk…?
All i know is that ADEM is not something that is not easily diagnosed and it is not something to easily overcome.

If anyone has a question for me . Im all ears to answer them to the best of my knowledge .

Be strong!

My ADEM hit me at 46, so it does happen. It’s a rare condition already, and it tends to affect children because of their reactions to vaccinations. So yeah, it sucks being “rare.” I’m just past my 6 year anniversary.

I just recently started the Auto-Immune Protocol which is a diet doctors use to see what foods cause sensitivity and inflammation. I’ve already identified 3 things. You can find the book at the library or on Amazon The Auto Immune Protocol Cookbook. Basically you can eat veggies, fruits and grass-fed meats. Then once your body has calmed down, you reintroduce foods one at a time and watch for reactions.

I lost almost 10 pounds in 3 weeks, and although my doctor is concerned to make sure I’m getting enough carbs and fat (You can have olive oil, avocado oil and others). Regular doctors seem to know nothing about this diet/protocol, but my natural doctors do. I had good reaction to the elimination of mostly crap food that I’ve been eating, but the boredom of what I can cook hit and I slipped back into my old habits, and down I’ve gone! Weight on, moodiness, head fog, exhaustion, etc.

Might be worth a try. Best of luck.

Laura

1 Like

Here’s an article about the woman who told me about the Auto Immune Protocol: https://bangordailynews.com/2019/02/23/bangor-metro/arts-and-culture/how-art-helped-one-woman-recover-from-traumatic-brain-injury/?utm_medium=Social&utm_source=Facebook&fbclid=IwAR1mqkfhJrTY_4tQjb01FtKJSDOXdrWPwSpZF4ikgRgJ1MFCcgCvGNFdxkY#Echobox=1550926607

Thank you Laura for the info … i will look it up!
I do realize that food has a huge part in causing inflammation though out the body. This might help me weed out some of the foods that aggrevate the most.
It is tough learning to adust to the newer modalities of my body function . Not being able to do things that i was accustomed to before is a struggle. I work a very physical job and i can say im about half the person i was before , but all in all … life goes on !

Hi Will
Hope u r doing fine. My husband is also dealing with the aftermaths of adem which was diagnosed in mid May 2018. Now the main part left in his recovery is stammering and frontal lobe issues due to which he is not able to perform even simple tasks. Are you able to join back work ? which part of your brain was mainly effected ?
What helped in your recovery most ?
Thanks

Ressa F
2. 42, April 2015

  1. Cause is unknown

  2. Unable to work

  3. physical challenges- hospitalized in ICU 2 weeks plus a month in hospital then 6 weeks in-house rehab-released and could not walk- mental challenges-cognitive ability restored after 2 months - I didn’t know the date, year or how old my daughter was- emotional- severe depression horrible anxiety

@Ressa this takes a lot from you, and going through all of that must have been absolutely devastating. How have you been doing lately Ressa? I am reading that you have had trouble walking, has the physiotherapy helped a bit? We would love to hear about your progress, and would love to help you as much as we can.

Best,
Arjuna from ModSupport

1 Like

(My stepson)

  1. William L.
    2 19 (Not 100% sure that counts as an adult.)
  2. Infection
  3. Still too soon to know, but we very concerned he won’t be able to work.)
  4. He seems to have mental changes.

Caseskane,

A 19 year old is an adult, however, he is also your child. Healing is always possible, however, it can be a SLOW and frustrating process. I lost all function of my hands and had to learn to use them again. That took about 6 months before I could consider myself fully functioning again. We all have different issues as it depends on where ADEM attacked the body. Most of us are left with some type of disability. For example, my major motor skills are ok. The minor motor skills in my hands were greatly affected, ex. Typing. I was left with some minor personality changes, ex, I can not handle 10 things at one time any more. I now see everything in black and white, the gray is much harder now (speaking of emotions). I’m more emotional. Sometimes my words disappear. But after 5 1/2 years, I am doing great.

Take one day at a time. Compare today to yesterday and the day he was diagnosed. Celebrate each and every little improvement. Try and control his frustration, because that makes everything worse. In addition, make sure you take care of yourself as well. Take care and please keep us updated.

Lynn

Where did the doctors say the ADEM attacked? When the initial paperwork with the doctor was filled out, was your name and his father’s listed as a contact?

Thanks so much for your kind advice. I’m pretty sure the lesion was on the lower left side of the cerebellum. I was listed as his emergency contact, but I’m not sure about his father. Our insurance is in his father’s name, so his father is “in the system” at least.

I would try and get your name added to his file, so that you can add feedback. We are here for simple venting. WE have all done it at one time or another. Sometimes it helps!!!

  1. Lisa D.
  2. Age 51 Year 2019
  3. This followed an injection called Tremfya (Used for sever psoriasis)
  4. Unable to resume previous activity/occupation. Completely debilitated.
  5. Cognition severly effected (due to L temporal lobe seizures that are being caused by ADEM)- expressive and receptive aphasia. Some right sided weakness, but otherwise physically okay.

Jcasebier,
I’m sorry you are having to deal with ADEM. We are here for questions and simply for you to vent, if you wish. We all are experienced, due to our own condition. ADEM patients can get better, however, it is a slow process. Frustration can be an issue. Celebrate each and every little improvement. Compare your state to yesterday and last month and the day you were diagnosed. We are here for you. Please keep us updated. Lynn