Acute Disseminated Encephalomyelitis (ADEM) Support Group

Help me with my research about the long-term effects of ADEM

Hi everyone,

My name is Mark, 25 year old Belgian guy. I was diagnosed with ADEM in the summer of 2013. I now suffer from moodswitches, short-term memoryloss, bad hearing, very impulsive behavior, personalitychanges and depression. I struggled the last years with all these things. I never really though about the fact that it could have been related to ADEM. Doctors never warned me or said anything similar like that to me.

I never searched for a cause, I just though “This is me! I’m in my adulthood, just having a though time finding my place here!”. Well… since the start of this year I realised this could be related to my ADEM history.

I’m going through a very dark period now, I’ve never been so deep. My depression is taking over my life. I broke up with my girlfriend and I gave up my job as a Project Engineer… I go to a psychiatrist since short. I don’t see the point of anything anymore. Well… almost anything…

As a graduated engineer, I’m used to and driven to find a solution to problems. Therefor I first need to examine the problem in detail. The set-up: “What are the mental and physical long-term effects of ADEM and what is their cause?”

So since short I started to do some research about ADEM and long-term effects together with a friend of mine (an experienced doctor). He’s interrested and wants to help me with this.

The first thing I really need, are references. That’s why I started this topic (the set-up will be similar like LauraK topic “About ADEM” (thanks LauraK for the idea!)). This research has been set up for ADEM diagnosed children as well as for ADEM diagnosed adults.

So if you would be so kind to take a bit of time and write down your experiences with the long-term effects of ADEM. Mental effects as well as physical effects. I would appreciate this A LOT. Thanks in advance. :slight_smile:

  1. Name
  2. Age
  3. The date you (or a loved one) got diagnosed with ADEM
  4. First physical and mental symptoms.
  5. Period of hospitalization
  6. Period of recovery
  7. Long-term effects (mental and physical) => Don’t hold yourself writings things. :slight_smile:

Hi hope you are well. Basicly just take exactly what you are saying and duplicate as to what I’m going through right now except I’m 52 was diagnosed April 2015 exact same symptoms. My last Neurologist appt last week he is referring me to psychiatrists. Hearing getting worse. Seems short term memory is getting worse Moods are crazy Bein frustrated and snapping very quickly. Processing is a problem. Only difference between your symptoms and mine is that I think my vision is getting worse. M.

Mark, my name is Lynn and I am now 57. I was diagnosed in May 2013 and I have been left with neuropathy in both of my hands, which is on a 24 hr. basis. I have had all of the same symptoms you are talking about. The problem is that everyone has different symptoms and different final results, which makes ADEM difficult to deal with. What has helped me is good nutrition and vitamins. I am not on any medications, have difficulty sleeping, I get stressed out much easier, can no longer handle loads of multi-tasking and sometimes have difficulty verbally as far as connecting my words. Fortunately, I work for my husband, who is a physician, so I am able to work where I can go at my own pace when needed. He says my personality is slightly different, but nothing he can’t live with.

To go back to the beginning…I had ADEM for 3 or 4 weeks before it was diagnosed. I was in the hospital for 4 1/2 days of IV steroids. That cut down my symptoms about 70%. I had numbness (pins and needles like when your feet go to sleep) from the bottom of my feet up through my shoulders and it came on overnight after a neurovirus. I lost all function of my hands. I started finger typing after about 3 months and full finger typing after about 1 year, however I’m typing MUCH slower. My only physical symptoms are in my hands. Large motor function is pretty much fine. I struggle with the fine motor function.

I try and stay positive…after all, I am doing ok, can do pretty much what I did before and I feel lucky, because I was not as bad as some patients. Frustration…yes there is plenty of that, but I try to keep pushing forward. I find that being a Greeter on this site and by trying to help others going through ADEM, has actually helped me. I volunteer at church and where else I can help. This all helps me, too. Try staying busy doing things that give you peace and that make you feel worthy. Take one day at a time. Remember what it was like at the beginning…have you improved? Celebrate each and every improvement. I wish you the best, Lynn

Sorry mark my forgot to ask. Does your vision seem worsening as well? This is almost like a mysterious type of closed brain injury. Not many have much knowledge of it.

Lynn I finally seem ok physically from bed to wheel chair and now normal physically. I’m experiencing a lot of cramping in the legs as you getting stressed and can’t multi task. Mark , Lynn are either of you having cramps as well in the legs?

My feet cramp a lot and I have constant numbness in my feet, however, I also have herniated discs in my back, so it’s hard to know if it’s coming from my back or my ADEM. I occasionally get leg cramps, but here again, it could be from my back. Lynn

Mark, could some of the cramping because you’re sitting in a wheelchair?

me m11
52
The date you (or a loved one) got diagnosed with ADEM April 15 2015
Confusion
April 14 to June24. 2015
Still not 100%
Long story short exactly same as yours except my age and seem vision is effected as well.
Be happy to exchange coordinates

Name: Martin
Age: 36
The date you (or a loved one) got diagnosed with ADEM: February 2015
First physical and mental symptoms: eye infection, bladder problems, severe shaking, hypersenitive skin, severe muscle fatigue
Period of hospitalization: 6 days
Period of recovery: still on going
Long-term effects (mental and physical) => Don’t hold yourself writings things. Mentally - this thing isn’t going to hold me back; experience, adpat, learn limitations (which doing really badly at!!) Physically, in nappies and need Viagra far too early in life!!

1 Like
  1. Name
    Nichole
  2. Age
    34
  3. The date you (or a loved one) got diagnosed with ADEM
    June 2005
  4. First physical and mental symptoms.
    Headache, chills, fever, nausea
  5. Period of hospitalization
    Hospital 22 days, inpatient PT/OT 10 days
  6. Period of recovery
    8 months or so
  7. Long-term effects (mental and physical) =
    Memory loss, fatigue, lack of concentration, weakness

Name: Ronnica. I was diagnosed at 36 (November 2016). First symptoms were like a cold. I was in the hospital for 4 months and rehab for 1 1/2 months. I have neuropathy in my hands still, get weak easily, have difficulty sleeping. Anxiety and depression are now common place. I am an attorney in Texas and working more than one case at the time is extremely difficult and I have memory loss. I get easily frustrated, have permanent frontal lobe damage and hide things very well!

I’m sorry to hear about the difficult time you are going through.

I’m 25 years old, and got diagnosed on the 26th of December 2019.
Initially I had a bad headache/ neck pain and vision issues. Went to hospital and they treated me for a migraine and sent me home. Then the next few days I slowly lost bladder control and had left sided weakness. I went back to hospital on the 25th of dec, that night I was completely paralysed on my left side. Started IV steroids on the 26th of December for 5 days. Within those 5 days most my movement on the left side returned. 1 month later I think walking and strength is relatively ‘normal’ I still have a catheter …

I’m still very early in my days of recovery so I’m tired most days :sleeping:, numbness throughout my body.

  1. Name: Vince
  2. Age: 32
  3. The date you (or a loved one) got diagnosed with ADEM: September 2017
  4. First physical and mental symptoms: Optical Neuritis
  5. Period of hospitalization: 3 Months
  6. Period of recovery: Unless i took an inventory of all skills, abilities, and life satisfaction markers, i cannot say.
  7. Long-term effects (mental and physical): Depression and anxiety issues are moot due to the fact that i have had them since i was 8 (this includes thoughts of self harm and no i am still not getting treatment for it as i have dealt with it since i was 8 so i can deal with it now). Internal dread and self defeatism has increased to a certain digree. Introversion and want for seclusion is on an upward trend. sleep is maintained at 5.5 hours unless intoxicated. recklessness and loss of interest and interests have increased. No physical issues to report. Bladder control and volume reserve limit back to normal. 1000% increase on everyone asking when i will get married and have kids. This includes my doctors :unamused:.

Really just waiting for :ghost:

  1. Name: Alexandra

  2. Age: 31

  3. The date you (or a loved one) got diagnosed with ADEM: February 15th 2019

  4. First physical and mental symptoms: Monday 11th, started like a cold, Tuesday 12th very bad headache and a high fever, Wednesday 13th same as the day before but I started to get dizzy when I moved my head to the point that I threw up, Thursday same as the day before plus blurred vision and weakness in my legs, and I was tired I slept all day which started on Tuesday. Friday 15th same as the other days but I was now paralyzed from the waist down when the paramedics came. At the hospital the paralyzes went up to my chest and the day after I also got dubble vision. 7 days later I also was weak in my arms and shewing food was a days work because my Jaws would hurt because the muscles got tierd fast.

  5. Period of hospitalization: 3 weeks at the neurology ward and then 15weeks at at rehab facility

  6. Period of recovery: still recovering

  7. Long-term effects (mental and physical) => Don’t hold yourself writings things. :slight_smile:

Periods of fatigue, short fuse, hypersensitive skin on my belly and shoulders, some normal functions in my left leg but I don’t have normal strength, weakness and some control over my right leg, no normal bladder funktion, memory loss, can loose myself mid sentences, some changes in personality I was very outgoing before and loves being around people now I’m more mellow I still like to sociolase but I also prefer being alone at home chilling with my cat more than before. Loss of appetite and don’t enjoy food the way I used to.
:thinking: Can’t think of anything else right now but maybe I have forgotten somethings, but that happens when your memory isn’t what it used to be.