Acute Disseminated Encephalomyelitis (ADEM) Support Group

About ADEM


#1

Hey gang,

So I went to the symposium this past weekend that dealt with Neuro Auto-Immune Disorders (ADEM and 3 others), and very little was discussed about adult on-set ADEM. I approached a number of the researchers, and they are under the impression that very few adults get ADEM! WHAT?!?

So here is a request: if you or a loved one were 18 or older when you were hit with ADEM, would you either respond to this post or email me at ■■■■■■■■■■■■■■■ with the following information:

1. FIRST NAME and LAST INITIAL

2. Age and year of on-set of ADEM

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

4. Are you able to resume your previous occupation, if so part-time or full-time?

5. Anything else you'd like to add (physical challenges, mental challenges, emotional, etc.)

I will compile a list of folks willing to respond to show them that there are many of us out there. Please help me urge the researchers on by responding.

Thanks,

LauraK


#2

Hi Laura, I have emailed you our information on Brian.

Thank you so much, lets hope all the members reply and share their stories to help fast track research on this disease.

Kind Regards

Belinda


#3

Lynn P., 55 years old at diagnosis in May 2013. I had a neurovirus. I am working full time with a few adjustments. I have permanent damage to my hands by way of fine motor skills, personality changes, I can not multitask the way I did before. I now think in black and white...the gray is gone for the most part. I am much more sensitive. My husband feels I have pseudobulbar now. My words don't come as quickly and I sometimes lose them when speaking. I hope this helps with the doctor's awareness.

Lynn


#4

Thank you, Lynn! I also have pseudobulbar now although I think it's getting a bit better than it was 2 years ago.

Hang in there!

LauraK

Lynn said:

Lynn P., 55 years old at diagnosis in May 2013. I had a neurovirus. I am working full time with a few adjustments. I have permanent damage to my hands by way of fine motor skills, personality changes, I can not multitask the way I did before. I now think in black and white...the gray is gone for the most part. I am much more sensitive. My husband feels I have pseudobulbar now. My words don't come as quickly and I sometimes lose them when speaking. I hope this helps with the doctor's awareness.

Lynn


#5

Hi, my mother currently has it diagnosed this year, Australia, Karen R, 50yr old, not able to resume any work, still in hospital, unable to move right side, eyes jump, stutters in speech, depression from this, highly emotional


#6

Zachary W.
25, 2013
No shots received, no illness that we were aware of, he had season allergies and was taking Claritin. Doctors believe he may have had a cold or something that didn’t really affect him too badly but caused his body to start attacking itself
He is back to work full time. He was admitted in hospital in August, diagnosed with ADEM mid Sept, released for home (after in patient rehab) in October. He resumed full time work in January
He has done surprisingly well. He was very emotional in the beginning. I think the heavy doses of steroids contributed to this. Also dealing with what happened he had little memory of what happened. It took some pt to get his strength back. He still sweats perfusely and has bladder problems. I don’t know if that’s from ADEM or being cathed for as long as he was. His bladder issues seem to be getting worse lately. They got were really bad at first, got better and now seem to be becoming more problematic. He goes frequently, especially at night. Also has trouble initiating. Lately bed wetting has increased again. It seems to get worse with being more tired. He always gets up 5 or 6 times a night I think sometimes he just sleeps through it.


#7

Eddie K

age:65

Unknown cause

Retired, part time metal art and cow skulls sales (unable to continue doing this)

Extreme fatigue,all over widespread pain, confusion, foggy vision, lack of esteem, feelings of depression, emotional outbursts, etc


#8

At diagnosis, slurred vision, extreme vertigo, confusion, could not think clearly, to answer questions, could not feed himself, still experiences memory loss, thought process difficult at times.


#9

1. Mike L

2. 28 and 1994

3. Not sure.

4. No, I have been on disability for the last 20 years. Was a Financial Analyst.

5. I have learned to deal with the emotional and mental challenges (forgetting names and a little slower putting a thought together) but my right side still has some weakness, mostly in my fine motor skills, and my speech is still slurred and a little labored.


#10

Thank you for sharing!

mlafko said:

1. Mike L

2. 28 and 1994

3. Not sure.

4. No, I have been on disability for the last 20 years. Was a Financial Analyst.

5. I have learned to deal with the emotional and mental challenges (forgetting names and a little slower putting a thought together) but my right side still has some weakness, mostly in my fine motor skills, and my speech is still slurred and a little labored.


#11

1. Shama R

2. I am 32 now, 28 when I had ADEM.

3. It was likely post-infectious, after a bad cold.

4. I am a PhD student and teach at a university. I took a year to recover and then eased back with just teaching for a year, and then resumed research slowly. Work has been slow and difficult. Part of that is the nature of research, but it is also hard work to come back to after being sick and recovering. I forget things more than I used to, but I am able to teach and research and just make sure I take notes.

5. Certainly it's traumatic to go through a severe illness, so I have been dealing with the emotional aftermath. I couldn't walk when I was sick but went through physiotherapy and gained my strength. My mobility is mostly back to normal but I have joint pain. My bladder and pelvic floor are still dysfunctional and will likely never be back to normal and this is a constant problem--the most concrete and severe lingering disability. I also get irrationally worried when I'm sick or have a headache that it could come back.


#12

Thank you for sharing.

LauraK


#13

Sue S.

54 - 2009

Infection - Viral

I am working Part-Time

I am currently doing Physical and Occupational Therapy My left leg has not recovered from the weakness. This has been a challenge due to Neurologists not making decisions on MS vs ADEM. I will go back to work full-time when I am walking.


#14

Hi Lauren,

I gave details about my wife, Ingrid, in an earlier post. She was 77 when she got hit by ADEM in August 2014, following a gastro attack. To a degree she has recovered and now drives again and teaches at U3A as well as doing jobs around the house.

She is still very wobbly on her feet, the result of ataxia of the cerrebellum I believe. She has also developed (over the past six months) some emotional changes in character for which she will now receive psychological counselling.

You are quite correct. Most neurologists deal with childrens' ADEM and mature sufferers are out of sight by the profession generally.

Keep up the struggle and many thanks

Dooglass


#15

My name is Minaz I’m 52 and got hit with ADEM april 2015. Not working yet but just finished out patient rehab with a discharge on the physical side but still issues with cognitive and speech communication. They had a hard time deciding if MS. Trepidation didn’t work for me but after the 4th or 5th plasma exchange started seeing improvements.


#16

***i meant steroids didn’t work for me


#17

Hi Laura

I emailed my son's information to you thank you so much for doing this. It helped me too reading how other adults recovery is going because I am quite perturbed about my son aged 31. The neurologist expects a full recovery because he says he is still young but sometimes I feel less hopeful. He is not learning much because of his short attention span.

The information presented here is helpful.

Sarah


#18

THANKS TO EVERYONE WHO POSTED HERE OR EMAILED ME! I will continue to compile the information and share it with any and all who will listen.


#19

Thank You LauraK for your hard work,

Sonie

LauraK said:

THANKS TO EVERYONE WHO POSTED HERE OR EMAILED ME! I will continue to compile the information and share it with any and all who will listen.


#20

Hello Laura,

Thank you for doing this. Until I got ADEM, I had never heard of it. I was a Pediatric R/N. !

1) Sue F

2) 2009 57 years okd

3) Unknown cause. Previously very healthy. Started with weakness in rt foot and leg, felt weird ! Went to ER. CAT scan revealed ? tumor. All within 24 hrs..

4 No. My legs, balance, proprioception impaired,.weak

5) I had brain surgery for a tumor, which turned out to be lesions, Spent 3 days in ICU, then hospital for recovery 10 days.Spinal tap, MRIs found more lesions in my spinal cord. Started on IVIG and large doses of Prednisolone. Then Rehab for 6 weeks, PT twice a day. Had to learn to walk, sit (not slump!). Very weak. Thankfully upper body only slightly affected. Wheelchair bound. 3 months, total, in hospital. Went home, PT 3 x week. Eventually, could walk with a walker and sometimes with just a cane.

Now 6 years later, still use walker, legs still weak, but able to get around. Can drive with hand controls, thank goodness ! Mentally, still good. I'm able to do volunteer work, from home, which I love..

I have an implanted Baclofen pump, for leg spasticity. Take Lyrica for nerve pain, dose increased over time. Have neurogenic bladder and bowel. Need laxatives and Vesicare. Get frequent UTIs. Go to PT once a week, for muscle improvement and balance, also psychological encouragement. Get depressed when I don't feel well and tasks become a burden, otherwise I'm thankful I am not wheelchair bound, and hope that never happens !

I agree that we need some research into this condition. I was repeatedly asked if I had recently traveled outside the USA, when I was first ill. Answer was no, but I was doing patient care at a hospital in California, where there were lots of migrant workers. We worked with some really sick kids, with serious infections, in ICU. All my labs results for viruses etc came back negative.

This was a devastating occurrence for a fit, healthy person and I always thought I would recover completely. How wrong I was !

Thank you,

Sue.