Acute Disseminated Encephalomyelitis (ADEM) Support Group

About ADEM


#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.


#21

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!


#22

Hi Laura,

I am the husband of a lady aged (now) 78, who contracted ADEM in August of 2014.

It appears that the attack followed a gastro attack for which we attended our local hospital here in Adelaide, South Australia.. After being sent home with tablets after the initial attack, we attended again a week later when the gastro was more severe. After two days, my wife fell into a coma and was quickly transferred to another hospital with neurological facilities. Fortunately, the doctors there identified ADEM after a few days and began treatment straight away. As a consequence, she made quite a rapid recovery and was transferred back to the original hospital after two weeks for rehabilitation.

Now, nearly two years later, she is nearly back to normal although there are still some issues not completely resolved, She has food allergies which are slowly dissipating and a major problem with her balance which means she needs a cane to assist walking. There are also psychological after affects; more emotional, short term memory problems etc. But nothing more major than that .Now, she is driving again ,cooking and housekeeping as in former times, teaching German again and living a relatively normal life with no major problems.

Reading others' responses, we are grateful that she has escaped so comparatively lightly.

I hope this gives hope to other ADEM sufferers and their carers

Doug Eadon


#23

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


#24

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!

#25

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.


#26

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


#27

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.


#28

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

Laura


#29

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!


#30

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


#31

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


#32

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 !


#33

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