Acute Disseminated Encephalomyelitis (ADEM) Support Group

New symptoms or still recovering


#1

Hello Everyone, My name is Jessica, my four year old was unclearly diagnosed with ADEM in July 2016. The Dr’s were unsure bc she only had one lesion on her pons and cerebellum but since she responded well to IV steroid treatment they went with the ADEM diagnosis. Her lesion was almost completely resolved in her 2 week follow up MRI and she was back to baseline with her gross and fine motor skills after 2 months of PT and OT. We are coming up on her 6 month follow up MRI March 1, 2017. I am not sure if I’m being paranoid or if I am witnessing some of the first symptoms returning. She says she doesn’t want to play at the park bc her legs hurt. She sort of wiggles when she is standing sometimes as if she needs to go to the bathroom when she actually doesn’t. And I feel like I have noticed her left hand shaking more and she seems to be favoring her right hand again (though she is right handed but she seems to try and not use her left hand for much at all lately). She has also been more clumsy and emotional than usual. I just can’t tell if these are normal 4 year old things, or if she is just still in recovery from her first ADEM attack, or if she is on her way to having another attack, or if she even has ADEM at all rather than MS or something else. We have a neuro appt on Tuesday, but I am worried that without an MRI he will not be able to tell if something is wrong again. Sometimes she is perfectly fine and no one except me or her Dad a little bit has really noticed these things. But I am just flashing back to those short months ago when she was in the hospital and as her mom I feel that something isn’t right. Is it normal in ADEM recovery to see these symptom wax and wane? Or should I be concerned she is about to get worse?


#2

Hey Jess,

Everyone is unique so it’s hard to say but for me personally I developed leg spasms after about 4 months and they’re still ongoing despite a reduction in my lesions. I had a lesion in my pons too.
They vary day to day. Some are severe and others just small ones like just a toe.
My moods fluctuate like as if I’m having very severe PMS but every single day. For me it’s never ending.
I would definitely request another MRI. They may just suggest it anyway to be honest, they let me have another MRI every time I notice a worsening of symptoms etc…
Best of luck to you!

Lou x x


#3

Yes, each person reacts, responds, and recovers so differently.

I was 64 when dianosed 8 years ago.I am still recovering. My chief complaint is chronic abdominal/pelvic pain for which there is no diagnosis. And of course treatnents have been shots in the dark.

I wish your daughter the very best.

Judy


#4

Hi Jess and everyone. My husband is 45 now, was diagnosed 3 years ago in Feb and is still getting new lesions. He has an MRI now every 6 months which they allow us. He just had a course of 4 weeks Mabthera 200mg Infusions as the lesions had spread to his lower spine. Its a radical treatment but he had it 1 year ago previously and the lesions in his brain and upper spinal column have greatly reduced. He suffers from chronic pain daily, some days are better through. He gets like electric shocks through his buttocks, legs and toes. Wind and heat he is still very sensitive. Even clothing hurts him, and a shower is the worse! The water is like needles no matter how soft the flow… Some days he cannot tolerate being outdoors which is a huge problem as his job is in construction. He can still only lie on his back at night. He is still working full time despite all of this. His work keeps him sane and keeps him from giving up. On the weekends he really falls apart, and my sons and I are pretty much alone. The disease has not affected his mind in anyway I have seen, although living in chronic pain, your mood swings will be greater, and not surprisingly! He has asked me on more than one occasions to help him find a way out of this hell hole that he is in. :sob: Its quite scary for me and our 2 young boys some nights, as he will scream in pain when it gets bad. This disease is hell. So yes, for my husband, 3 years on and he is still suffering constantly from this disease, but he still has full functionality of all his fine and motor skills, and mind, its just chronic pain and fatigue. He has also been taking Cannabis oil this past year to help with the chronic pain. There are claims it has helped heal cancer as well. He is no longer on steroids, for now, but on pain killers like Baclofen, Lyrica 150mg etc, and he is also now on Morphine patches, 1 a week for the past month now. On the positive though so many reports I have heard back from say kids heal faster and have a better chance of total recovery. So keep your chin up, fight for MRI’s when you need them. I feel 6 months is quite useful, anything sooner is not enough time to note changes and will cost you an arm and a leg. 1 year might be too long, for my husband it is. But if things are stable then 1 year should be fine. No-one else out of your family including the neurologist will see those little changes. So yes, make a note of them as they happen, so when you see the Neuro again you have all the info at your fingertips. Note times as well, could be useful, you never know. My heart is with you on this journey. So sorry your daughter is having to suffer. Keep your faith, and know that you have so much support from the people in this group. Big Hugs!
Belinda


#5

Hello everyone my name is Crystal I am 30 years old and was diagnosed with ADEM in August of this year and I am currently in recovery… Everyday is a struggle for me but just recently I have started to feel like a burden on my love ones and very scared about my situation… Before I got diagnosed I had never heard of ADEM so now all I think about is ADEM… Can anyone give me any tips on what I can do to be more positive or think less about ADEM and more about how to fully recover?


#6

My name is Lynn and I was diagnosed in 2013. As you know or will discover, there are not a lot of doctors familiar with ADEM AND we all have different symptoms. What you need to know is this: we can and do get better. But, healing is a slow process. Celebrate each and every little improvement.
If you need info, we have links we can share and we have lots of experiences. If you have questions or simply want to vent, feel free. Take care of yourself, Lynn


#7

Thank you very much Lynn… I will be asking questions soon. … I am happy that I found this group thank you so much!


#8

Hello everyone… I have a question… Am I supposed to feel depressed or did anyone else go through depression if so how did you deal with it and does anyone have any tips for me that I can use for depression? Thanks everyone


#9

MrsDurley86,
I was the one dianosed with ADEM and I know that my husband was the one respondsible for getting me through my improvements and changes. Your child needs YOU! Your are his most important advocate. If you’re feeling depressed, know that that’s pretty normal for a parent in this situation. Trying talking to clergy or a counselor. You need to be strong and take care of yourself to be able to handle whatever comes next. Keep talking to us and asking questions. We’ve been where you are. Lynn


#10

Thank u so very much… This is so hard for me… I cry alot and idk what to do…I want to be great mom to my daughter but I have been in a horrible mood and idk how to lift my spirits… Some days I am ok but most days I think about ADEM alot and it brings me down! So any tips you all can give is greatly appreciated


#11

Hello I am Bob58 and was diagnosed in november of 201!,been in a braun fog since, on venlafaxine and lorazepam for depression and anxiety, they seem to be no longer working also caused me to be impotent which caused more depression , left my wife in october because of her refusing to be any kind of intimacy since I got sick


#12

Hi Crystal. I’m 32 and was diagnosed with ADEM in May 2018, after 2.5 months of symptoms and finally a brain MRI which showed multiple lesions. Neuro originally thought it was just post-viral syndrome, and I’m glad I kept pushing for more answers. I can identify completely with how you felt back in November… I seem to get upset/frustrated/sad about everything, my husband is having a tough time seeing me emotional and just not myself (brain fog), I started medical leave from work today to see if stress elimination will help… I just feel like a shell of a person and have no control over my own body. Did your symptoms resolve? Was there anything you found that seemed to make life a bit easier/more normal for a 30 yr old? My biggest complaints are spasms in my legs, and numbness on my right side that comes and goes. I appreciate any tips you can give me!
Thanks,
Merideth


#13

I was in physical therapy for 4 months. I also went to therapy for depression which helped. Everyone seems to have very different results, no one answer. I still have numbness left side, part of right and band around my mid section. It’s been 3 years. I do think stress is a key factor. Good luck with your new adventures.:heart: