Acute Disseminated Encephalomyelitis (ADEM) Support Group

About ADEM


#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