Acute Disseminated Encephalomyelitis (ADEM) Support Group

Recovery Phase

Hello everyone!

I hope everyone is staying safe and indoors during this public outbreak. I figured since we are all kept indoors and have a lot more free time, that we could somehow come up with a way to talk/message amongst each other. I think it would be great to spend sometime to share our unique stories and provide each other with useful information about our experiences.

I look forward to meeting many of you below in the comment sections.

Sounds like a GREAT idea!

I’ll start… most of you know I was diagnosed in 2016 - 3 1/2 years ago. I was paralyzed and unable to talk or breathe. I now walk and jog 5 miles a day! I am a bit worried about this virus and how it could effect all of us here. Our immune systems can’t be great. I’ve been trying not to gain weight during the quarantine, but man, baking while semi-vactioning is soooooo tempting! Best part about getting ADEM as an adult is realizing what all you missed out on, being given a second chance and being able to make the most of it! Worst part: ha ing to be really cautious right now and having permanent nerve damage! What is your story?

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Hello Ronnica,
Thank you for sharing your story! I am so sorry for this happening to you. I am so happy to read that you are doing better and have the ability to walk/run 5 miles a day. That is a huge accomplishment! That is amazing news!

I was diagnosed with ADEM, a blood clot and had about 3-4 seizures happen last July. I was hospitalized for the entire month. I was not able to walk, speak coherently, or feed myself. It was a terrible and dark time in my life. However, it is almost a year later and I am doing well. I am down to just one medicine to help prevent any future seizures. I am thrilled to report that so far I have no permanent damage done to my body. This whole situation will obviously stay with me for the rest of my life.

Like you I now have been gifted a second chance in my life. I am still in the process of exploring my purpose here. I am so glad you shared your story. Stay safe and I wish you all the best as you continue on in your journey in life.

Being confined to your house can be a very good way to become more lazy. That’s great that you can bake. What is your favorite thing to bake? Maybe now is the perfect time to experiment and come up with something creative and unique? I would like to hear of any recipes you have.

Well, I was diagnosed in 2013. We had no idea what ADEM was. My husband had briefly read about it when he was in school and it simply said a person can die, because it can hit the phrenic nerve and you go permanently to sleep. Thank goodness physicians do know a little more than that these days.

I started with 9 days of a viral infection. Then overnight, numbness from the bottom of my feet all the way to my belly button. Next day, it was up to my chest and down both arms. I lost all function in the hands. Made it really difficult to cook…

Five days in the hospital on IVs of LOTS of Cortisone, things started to improve. With the patience and support of my husband, my hands were useable again after about six months.

Discovering our site on Ben’s Friends, truly aided in my improvement. I, like everyone else, have been left with residuals or disabilities, if you prefer, due to nerve damage. However, compared to where I was when diagnosed in 2013, I am doing great.

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Hey Team,

Was reading a few of your comments above and wanted to respond where I could. I was diagnosed at 35 years old with many of the problems that you guys have mentioned above - slurred speech, double vision (the worst!), complete urinary retention, lost my ability to walk (any lower body functions) - those are just some of the highlights.

To respond to some of your comments:

Lynn - I, like everyone else, have been left with residuals or disabilities, if you prefer, due to nerve damage - there is a way to reverse this process (or at least make it never get worse). I’m excited to read more on your story.

Ronnica - Worst part: having to be really cautious right now and having permanent nerve damage! - Same Ronnica as Lynn - I went the Functional Medicine route and have gradually improved (doesn’t happen overnight) over the past 3 years. There is a reason why we got this, and there is a way to calm your fears on anything permanent.

Littleman3 - a month in the hospital had to be a blast!! Congrats on not having any permanent damage! Was there anything you changed in your life to be able to achieve this result?

Thanks Everyone - You guys are all rare specimens. To put into perspective, Adult ADEM happens in approximately 1 out of 1,000,000 adults (who’s really counting at that point). If an average person meets 10,000 people in a lifetime, then it will take around 100 lifetimes to meet 1 of you!!

Matt - Oklahoma City

I am in the UK And my nephew was diagnosed with ADEM in February 2019. He is unable to walk, has lost his sight. He does speak knows what has happened to him and has full use of one of his hands and other has now started to respond. Please what treatments / physio were you given. Who is your doctor / hospital where you were treated? My nephew is 44 years old. Thank you.

I am sorry you are going through this! It is not easy. Fortunately the prognosis can be very good - the swelling in the brain causes the inability for response. Once the swelling goes down, a lot can happen very quickly. First, high dose steroids and antibiotics. Give that a few days and see if there is any improvement. Plasma exchange is also a viable option and as a last resort, chemo. I was first treated at a Dallas, TX hospital called Presbyterian. However, my doctor has changed hospitals. He is wonderful. His name is Dr. Gupta and is in Dallas still:
Puneet Gupta, MD: Neurology Consultants of Dallas. I did rehab at TIRR in Houston and The Woodlands, TX. I have been given nothing in regard to ongoing treatment for ADEM, but the side effects have me taking Gabapention and Colazapam (I am not sure how to spell either!). There are ongoing side effects. Please know that “back to normal” will never happen, but on to something else that is okay - even good - is possible. Please feel free to reach out!

Thank you so much for your response. I will pass this onto my sister. Hope you continue to stay well and please stay safe from the awful covid.19.

Hi everyone!
I was diagnosed with ADEM February 15th 2019, it all started whit the seasonal influenza on Monday the 11th, the day after I had a high fever and a massive headache, by Thursday my legs where week and on Friday the 15th I couldn’t stand on my feet. The rest is blurry and my then boyfriend and father has told me what happened. I went to the ER by ambulance and later that evening the paralysis had went up to my chest.
I had inflammation in my brain and spinal cord. The neurologist said that one lession was on my brain stem and thats why my vitals was low. I also hade dubble vision for the first two weeks.
I was hospitalized for three weeks at the neurology ward got treated with cortisone, IVIG, antibiotics and antiviral medicine through IV, and then 15 weeks at a rehab facility. I haven’t had a check up since August and is now waiting for a checkup by the department of neurology.
I’m still paralyzed, but I can move my left leg normally but my strength isn’t back to normal yet, and my right leg I can move a bit but I feel very weak in it and my fot is “dropping”. I also have problems with fatigue in some periods and it can last for weeks is that normal when you have had ADEM?
One doctor I have spoken to says that she thinks my ADEM has triggered another autoimmun disease in me (MS) because she thinks my rehabilitation has taken to long and that I’m supposed to be able to walk by now. I’m walking with support at my physiotherapy but otherwise I’m in a wheelchair. But I’m make progress slow and steady I think, at least it feels that way. Another doctor told me that I’m going to get back to “normal” but it takes time, don’t know who I’m going to believe.
I have so many questions, hope you guys can help me,
Question one how long does it take to recover?
Is fatigue normal after you have had ADEM?
Has anyone of you recovered fully from your ADEM? And how long did it take?
After almost 1,5 years after my episode shall I give up my hope of ever walking again?

Sorry for my English, there may be some misspelling because I’m from Sweden. I feel like doctors in Sweden doesn’t have much experience with ADEM and I have hade so many things said to me that I don’t know what to believe.
I’m so glad I found this group because ADEM is so rare in Sweden that I haven’t meet anyone else that have had it and only heard about 3 others in a group on Facebook for those with spinal cord injuries.

Sincerely Alexandra

Alexandra,

Good morning,

First, there are very few doctors anywhere that know anything about ADEM. Everyone’s symptom’s are different and yes people get better, however, it can be a long process. We all tend to be left with some kind of disability and once again, it depends on where the ADEM attacked. Take one day at a time and celebrate each and every little improvement. How are you today as compared to yesterday, last week and the day of diagnosis.

Any questions or just if you want to vent, feel free. Take care,

Lynn

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I’m much better than in the beginning, couldn’t sit up right by my self and was “tied” to a wheelchair with a high back and no function from the chest down, dubble vision and couldn’t keep my blood pressure up so I fainted when I was moved from the bed to the chair. My eyesight was the first thing to get back to normal then my blood pressure. Then I started to get control over my upper body. It took about 6weeks for that to happen. Then I could move one muscle at a time in my left thigh. And after 4 months I stood up with the help of a walking table, because my thighmucels had started to wake up in both legs, after 8moths my but muscels started to wake up. Then the progress slowed down and it’s come to a halt right now, I think it’s my first so called Plateau. Even though my bladder has started to wake up two months ago it feels like I’m plateauing. And the strength in my left leg is almost back to normal but my right leg is still weak.

One doctor thinks that my slow recovery the last 6months is due to the fact that my ADEM trigger MS because of my periods of fatigue and that I feel more weakness in my right leg when I have those periods. And I loose myself mid sentence when I have my fatigue :disappointed: I won’t know until I get a new MRI it has almost been a year sins my last one, which sucks because my mother had MS that was hereditary. So I’m living in the unknown even though I’m happy with the progress that I’ve made, I want to know the status of my brain and spinal cord and it feels like the neurologist just left me hanging.

So maybe you are right in the sence that I maybe need to vent because I feel lost and a bit alone in my journey.

Alexandra,
We may not physically be with you, but you are not alone. Speaking for myself, I found our site once I was diagnosed and left the hospital. It was a life saver for me and helped me emotionally while recovering. I feel very lucky, because I wasn’t as bad as some people. I was not diagnosed till a month after my symptoms started. The worst of the symptoms, was that I lost complete use of my hands and had to learn to use them again.

We all have different symptoms, ADEM attacked my cervical spine. Even though, we’re all different, we seem to have some similarities. For example, a lot of us have some difficulty with our bladders. Quite a few of us, seem to feel slightly slower mentally. A good many of us are not quite the same people as we were. I’m a lot more emotional. Where I could handle 8 things at one time, now I’m better off with one. Before I thought in grey and now everything is black and white in my thinking. All of these things are minor though. You may notice all kinds of different things. Sounds like you’re starting to heal, it’s just slow. Keep moving forward, one step at a time.

Remember, you will get frustrated, but try and control it, so that it doesn’t take over. We’re here for questions, venting or simply friendship. Read all you can on the site and you’ll all types of situations and hopefully hints that might help.

Take care of yourself,

Lynn

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