Acute Disseminated Encephalomyelitis (ADEM) Support Group

Increased/additional problems after ADEM


#1

Has anyone experienced increasing/additional/new health issues after ADEM?


#2

My daughter, now 33, had ADEM end of 2015. Lost all faculties and things went wrong in hospital but now, after 2 years, has permanent optic nerve damage as she started off with optic neuritis, leaving her as a registered partially sighted person but she still works with special computer equipment. She developed serious food allergy to lentils. And has to self catheterise daily due to damaged bladder nerves. Also chronic fatigue and has cut back work hours. And leg cramps occasionally but finds high quality magnesium tablets help with this. Slightly different mentality too. She now takes Eskimo Brain Sharp, Biotin, Vitamin D3, Multi Vitamins and careful with diet. Hope this helps.


#3

I’m so sorry to hear about your daughter.

I still have most of the deficits from the ADEM but they have improved enough to be “tolerable”.

However, for the past few years I’ve been having new onsets of multiple symptoms/disorders that I’ve NEVER had before and are unrelated to ADEM.

So many doctors visits, added prescriptions, adding vitamins/supplements/minerals and no relief.
I’m starting to think the ADEM attack (CNS damage) is caused my body to shut down and decay.

Any thoughts? Experiences?


#4

Hi there, You are bringing my thoughts out into the open here with wondering what the future holds with secondary symptoms maybe appearing after a time. After all ADEM is quite a new diagnosis and is becoming not as rare as the medics say it is. So with the body taking a battering from the original diagnosis, I do think the medics need to be taking into account and preventatives from future troubles. Something I intend discussing with daughter’s consultant in UK in May time. It is a worry about being proactive about the future with all sorts of things. Daughter is being checked every 6 months with neuro consultant and eye clinic and has specialist bladder nurse. Luckily we have the NHS but we still have to push for things. Are you seeing a specialist? Are they doing research over there? I do wonder whether our consultant is still watching out for something to prove it wasn’t ADEM because he wasn’t totally convinced and of course there are similar neuro problems that occur. It’s very difficult. Consultant suggested Vitamin D3 last time which is what he prescribes for MS patients but no new lesions as yet, touch wood. I did wonder why he hadn’t suggested before though. But of course you have all the sunshine over there so not one for you! I still wonder as well, at the back of my mind, whether Lymes comes into it. Daughter got bitten in Rome previously but tests came back negative. I know of 3 people with Lymes now having taken private blood tests and 2 have persistent new symptoms which makes life harder and harder. NHS doesn’t always recognise Lymes here though. Difficult for them. They were all originally diagnosed with ME but new blood tests after a few years for all of them showed up Lymes. So one has to wonder about ADEM sometimes. She also had flu jab 6 weeks prior to illness, playing hard netball twice a week, was working really hard in events, grandmother died and had a new man in her life. So exhaustion can upset the immune system perhaps. I keep mentioning mindfulness to her but she shoots me down every time saying she is too tired to think about it but I think it would help to get involved in meditation/mindfulness etc. It might make things easier along the way. Sorry to blurb on. But it’s on my mind every day too as a mother!


#5

Yes. Fatigue and dizziness and pain. Mental fog. But those are all from the brain injury probably. Had decreased sense of smell and taste and hunger for a while but it seems to have come back. The fatigue is debilitating.


#6

My neurologist is the same doc that treated me during my hospital stay but haven’t seem him in a while.

I did a few follow up appointments and MRIs for about 1.5 years after the attack but my neuro pretty much made me feel like I was being dramatic and over exaggerating.
He also listed “conversion disorder” in my records without even notifying me or explaining it to me. Which I found out months later after getting a copy of my records.

I do need to follow up with a neuro again but the whole experience pretty much traumatized me from going.
I’m also too exhausted to even get 2nd opinion from a different neuro. The symptoms are exhausting enough…


#7

I’ve had those symptoms as well.
My fatigue, dizziness, pain symptoms never went away but they seemed to improving for a few years but they’re now getting worse again…

Fatigue has been so bad especially in the past 1-2 months I can’t even get out of bed or do anything some days of the week…


#8

Princess: I hear you. The last two months have been unusual for me, too. Maybe it is just the weather or who knows what. There is always an ebb and flow, so things will probably get back on the upswing soon.


#9

Yes I’ve also been crossing my fingers and hoping that its a seasonal/temporary thing that will go away.
It’s just so discouraging every time I feel worse or have new problems to add to the list…


#10

Hi, I’m new and I really don’t feel I even fit in the group. I was recently diagnosed with ADEM, but after reading everyone’s posts and stories I just feel so bad for everyone. I’m not very confident my diagnosis is correct. Everyone diagnosed has had a horrible attack and I have not. I do realize everyone is different, but the attack is a diagnostic tool of sorts. Anyway, I did respond to this post because, I supposedly have ADEM, and I do have increasing/worse symptoms as time goes.
My neurologist also did not inform me of a few additional lesions I have on my brain. I read it in the radiologists notes… I’m a little annoyed about that since I had gone back with new symptoms. :rage:
I know they are still researching and currently know a percentage of ADEM in adults goes on to be MS (children possibly too) :persevere:. I also have mastocytosis, it’s rare, and they don’t do much research on it. Let’s hope that since ADEM in adults being rare does not hinder the research. :blush: Even if that is not what is wrong with me. I can’t even imagine going through an acute attack like that :cry: you are all so strong, and you parents, bless you all :two_hearts::heart:


#11

Duchessewing,
I want to share my story with you. I was diagnosed in 2013 after having a neuro-virus. I woke up one morning with pins and needles (like when your foot goes to sleep) from the bottom of my feet to my belly button. The next day it was up to my chest and going down my arms. I lost all function of my hands and it was almost a month before I was diagnosed with ADEM. After 4 1/2 day of IV Steroids (I didn’t sleep for 2 months after that), things started to improve, but I still had to re-learn to use my hands. I have been left with some cognitive issues and some slight personality changes. My husband states that I’m still livable! Where I could multi-function before, I am much more comfortable with completing one task at a time. I am more emotionally sensitive and frustrate easier. Now, to present day…I am doing well. I too feel VERY lucky that I have not suffered what some have. SO, I simply try not to take things for granted and appreciate that I am doing well. It was not always this easy, but with the love and support of my husband…I keep marching on and I don’t feel sorry for myself. I still have life ahead of me. Keep putting one foot in front of the other and take care of yourself!!! Lynn


#12

All of my doctors have kept me in the dark as well… I’ve learned everything I know based on my MRI CT reports and researching on my own.

I understand how frustrating it can be. It still is for me…


#13

Your recovery sounds very similar to mine. I guess I also one of the “lucky” ones compared to some others who got it worse.

Even though my deficits and changes are still minor I still find them just as debilitating…


#14

I completely understand…


#15

Hi. I haven’t checked in for quite some time. My husband developed ADEM after a flu shot in 2012. He has never really recovered in the way the doctor lead us to believe he would. He had a relapse last summer-3weeks in hospital and 60 days rehab facility.
About 1 1/2 months prior to hospitalization he was becoming weaker, less verbal, reduced appetite and in fact I was at times having to feed him. The catalyst to take him to the ER was at a visit to a blood doctor who suggested taking him due to a question I had about him not urinating very frequently and the fact his head was lolling back which usually means illnes.
His conscienceless level was very low for three days. He couldn’t talk or move. MRI showed active lesions again. At this point they began calling it progress MS because of course ADEM does not recur, right?
One year later shows no active lesions.
He is much weaker overall, tired, dizzy, voice very lite. He has battled a series of MRSA infections courtesy of the hospital stay.
He doesn’t try anymore unless we make him with exercise. Not trying to be scary, I wish he had a fairytale recovery to relate and give hope, but it’s not happening. I am done emotionally and barely hanging on.
I would encourage those if you who have experienced this life altering phenomenon to fight to keep what you can of your strength. Work your muscles, try to do brain exercises, whatever you can to the best of your ability . Don’t be content to let your loved ones enable you to get more dependent on their help. We want to keep you safe but it could be keeping you from reaching potentials.
Sorry about the rant. I’m just overwhelmed and saddened


#16

Sweetie pie,

My husband kept pushing me forward…I thank God every day for him. We’d all be lost without our families! HOWEVER, you also need to care for you! Please do!

Lynn


#17

Everyone says that but no one willing to help, and he got hurt when I said I wanted to try to go out of town with my sister. I know this isn’t to group to voice all this but just wanted to address the encouragement for all of you to fight as best you can to retain and or regain whatever you can. It is heartbreaking to see him deteriorate when I know it is more his lack of desire to work hard more than the disease itself


#18

sweetie pie,

To a much less serious degree your husband sounds like mine after his knees were replaced. He did the absolutely minimum, even said he was fine with his legs only bending to 90 degrees (most knees naturally bend 125+). That is, until I hooked him up with a FEMALE physical therapist. All of the sudden he had someone he needed to impress.

Give me a break, right?

But it worked. I made sure his PT person was female every time and suddenly my slacker husband was working up a sweat and doing extra reps and all kinds of stuff so he could impress the GIRL. I could have killed him.

Maybe bringing in an occupational therapist (female) will give your husband the kick-in-the-pants he needs? Maybe a cute stranger to impress will give him the push he needs?

azurelle


#19

Hi , im new here , got my ADEM at 10 july 2018 , doctors in my country kosovo/prishtina said to my family i got MS , did my recovery at Turkey university marmara where nobody spoke english and I almost lost it myself , now im a little better but more aggresive and i get nervous way to fast , thing that never happened before and whats so sad is that i got troubles with memory , i keep forgeting everyfuckingthing y’all


#20

Hey that sounds like me! I bet a lot of us!