I have not been diagnosed as having ADEM, but it is the closest thing I have found that resembles what I am going through. All I know is that this is one of the most frustrating things I have ever gone through. None of these pains make logical sense to me and it is very depressing. I had a flu vaccine on the 24th of December 2015 and over the next month things got really bad. I lost my eysight to the infection in my body causing sever sclerlitis and episcleritis, and my hearing also was very bad. like standing next to a jet engine and my wife would sound like a chipmonk off in the woods. I had extreme head pains especially in the back of the head where the spine connects to the skull. They did a biopsy on my temple to check for temporal arteritus which was negative. It has been a year now and that neck and back of the head pain is still with me. 6 months of prednisone gave me my sight and hearing back and my inflamation is down but these weird pains that keep showing up, all the time, and the fatigue is wearing on me. None of it makes any logcial sense to me. I get the sensation of bee stings, bugs crawling, and joint, muscle, bone and nerve pains are constantly happening. I think I am doing better and then wham the pains hit again. Heat drains my batteries and cold tends to help, if it is below 40 degrees as it slows and lessons the severity these pain flairs. What was weird was the pain areas didn’t hurt when I touched them which confused me, but now things are changing in that regard and they are beginning to be sensitive to the touch. Hands and feet would go to sleep when I would lay down, to sleep, and also at times when I am awake. symptoms are too numerous to mention and I keep forgetting things. I also had a time when I kept dropping things. And the wrong words would come out of my mouth when I tried to talk. Does this soind like ADEM?
Hello,
Your symptoms do sound very familiar.
You need to have an MRI of the brain and spinal cord to check for lesions.
Try to see a Neurologist.
And yes, vaccinations can cause ADEM. It’s rare but does happen.
Hope that helps a little!?!
Good luck getting a diagnosis!
Hi. Dan, Yes, Dan I took flu shot in Nov. 2015 and the pain in neck started on my left side. Then numbness in left leg, then unable to wiggle toes on left foot. I was using a cane, then walker and now wheelchair. Thur this last year things became progressively worst. U need to Neurologist and have MRI, steroids do help although they have many side effects when using in high dosage, not something you can just stop taking. Steroids caused me to be a diabetic, acne, severe mood swings, hair loss. I had missed this summer with my children in and out of hospital and rehabilitation center. I finally asked for IVIG treatment or Plasma exchange which is expensive and most insurance won’t cover it but it is next step in treatment steroids just seem to mask or sustain the symptoms. Also cymbalta it’s an antidepressant the generic form helps with my nerve pain in legs and feet. That pins & needle pain and burning. It also helps with my mood, which these days i am really sensitive. The main thing is to try and stay positive, focus on your what you have ( like ability to walk) not the things you don’t have. Also to have patience with your love ones. I hope you get better and I have been some help to you. Good Luck
Agree 100%. A neurologist should be following you closely with MRIs – if lesions present, make sure they are healing.
We all have different sets of symptoms with ADEM. You definitely should have had a diagnosis long ago.
It has been almost 12 months since the major episode? will the lesians still show up? I was on prednisone for 6 months and they gave me a low dose of gabipentin which I had to quit as it really messed with my head. I was affraid i would either kill someone or commit suicide on that stuff. At the time of the episode they did a spinal tap and found my lupocites were low and my neutrophil# were high. I have been to a nueroligist who is about to retire, but all he did was stick me in a few places with a saftypin and checked my strength while he used resistance. It seems that when I go to the doctor my blood pressure rises and my symptoms subside. Also at the time my stenght was fine. It hasn’t been a strength issue but more of a fatigue and weird sensation issue. he checked my eye movements and said I my brain was fine. But these weird pain and sesnsations are my problem. it is like something is short circuting in my electrical system which is giving me all these different types of pains and sensations in all parts of my body. I am even re-living the pains of injuries that happened 40 years ago. And this VERY FRUSTRATING pain and stiffness in the upper spine at the back of my head has never went away. My vision has returned but there are still times when one eye or the other will not see clearly. In the very beginning i would at times only see designs or everything would go black and I would loose my balance and I could not stand long enough to pee with out evety cell in my leggs screaming in pain. For a long time it felt like someone was compressing my spine but that has subsided some. My shoulders also are a constant irritant. like bursitis, muscle pain, or nerve pains which alternate constantly. I am beginning to feel like they are thinking i am just immagining these pains. But I hadn’t been to the doctor for more then 30+ years until I had gaul bladder remoeved two years ago. Now this. I feel so useless and my emotions are on a roller coaster ride. I have become super emotional that everyones pains and heartaches are like they are my own. I even feel bad for mosquitoes! If you want someone to feel you emotions, I am that guy! I can cry with anyone now. My neuroligist hinted at MS but she had not heard of ADEM or MDEM. One strange thins is: I am a organic farmer and I have noticed some relief when I pull weeds and hit a patch of burn nettle. When my arms are totally on fire or numb from the nettle my sympotms seem to subside. Also when I am chopping Ghost peppers for the dehydrator and my hands are on fire the symptoms will subside. And while I am making garlic powder and my hands are coated in garlic juice and I am inhaling the garlic powder in the air my symptoms get better. It is like I am back feeding my nerves and things kind of stop for a while.
Hello,
Try this link
It explains things a bit more.
I have altered sensations too. Burning in my back, just like sunburn. Cold now feels like pain. I have constant pins and needles in my legs.
It’s hard I know but there is medication available that helps a lot.
I can’t take it though as it makes me feel spaced out.
MS is a recurring condition. ADEM is a one time attack.
I still have lesions in my brain and spine and MRI’s every six months to check for any new lesions. So far I have no new ones. The original ones have gotten better.
I suffered in Sept 2014.
Coma for 3 weeks, paralysed on waking. 4 months in hospital.
I still have balance issues, short term memory problems, cognition problems and loads more.
I’m permanently disabled now.
Fatigue is a major issue and wry common in brain injury.
You can contact the Encephalitis Society. Google them.
They can give you advice and support and it’s free to become a member.
Lou x
I was told that MS rquires more than one episode . Mine was a major episode reaction beginning about 4 days after my flu vaccine. All my sympotms seem to be a continuation of that event.
I had the flu vaccine and on the 21st of December in the afternoon. On the night of the 24th I began to get a light migrane. From there it began to grow and by the 5th of January I was in screaming head pain and loss of vision and my hearing. I had went to the ER on the 2nd and they said I probably had a virus. On the 5th I couldn’t stand any light at all. And when I say i couldn’t stand light, I REALLY could not STAND light. On a pain scale of 1-10 I was somewhere around a 30.
So you are saying that if I get a MRI these lesions shoudl show up still? If this is MS, ADEM, or MDEM, am I going to be dealing with the high medical costs for the rest of my life? I am super concerned about my future burden due to medical expenses as I am pretty much broke and I can’t nor do I want to mess up my wifes medical needs. I am presently trying to get compensation from the Vaccine court for future medical bills but fear that because they haven’t made a firm diagnosis of my present issuess I could run into trouble getting future bills covered. To date they have diagnosed that it was indeed a reaction to the flu shot and because of that shot I had scleritis and reactive arthritis. They also have acknlwledged that I am having issues in my vertabrets going into the head and issues in my spinal fluids.
How does one find out for sure and if a diagnosis is ADEM is there any hope for things to get better without screwing up my mind and body on drugs? I think that if I had some anwers I could deal with the pain but the not knowing where this is headed or what is causing it, is bothering me the most. I did NOT do well on that Gabipentin. And I CAN’T do nothing like they say I would have to do, if I were to go on disability. I have to do things to get my mind off this nightmare. I can’t believe that the disability program won’t let me even do charity work. It is like they want us to vegitate so we can die early. :’( Sorry, but that really bugged me.
Thanks. So far I have all the sensations except the one where I am sensitive to touch. That fact has alwasy made me think it is not MS. But the sensations often occur multiple times a day (often in the 10s per hour) but not just in the skin but they are much deeper then the skin too. And in the joints at times. The limbs are the worse. But one thing is different with me. What ever is happening it has increased my sexual/emotional feelings, thoughts and urges rather then decrease them. I am thinking it is the stress might have something to do with that.
Hi Dan,
ADEM and MS are inflammation if the brain and spinal cord with damage to the Myelin Sheaths in the central nervous system.
It could be Encephalitis. That’s just inflammation of the brain and has many of the same symptoms.
You need a diagnosis though.
ADEM has, in most cases a full recovery rate.
I’m one of the exceptions with ongoing disabilities.
I don’t know how things work in the USA. I’m in the UK and we have the free NHS. My meds are all free, as are my appointments and investigations such as MRIs etc…
I take Pregabalin, Baclofen and Vesicare daily.
I also have catheters on prescription as my bladder no longer works properly.
Lou x x
I have been fighting this for almost 12 months now. Is that long for a ADEM recovery?
I think it’s very different for all people.
I’ve heard a number of people say that it’s a 2 year recovery and after that you don’t improve much but again, some have said after 4 years they still see small improvements.
There’s no set rule. Brains are very clever things.
My Neurologist told me to think of recovery in terms of years not months.
Lou x
@Dan - I got ADEM from vaccine. It’s rare- but it happens. Doctors are not sure from which one… and I am 2 years after it started and still fighting it…
Wish you all the best.
Naama, Are you still seeing any improvement? Do things get worse the longer you are awake? Does any diet changes help? I guess I will stop there as I am sure you don’t want to answer the million questions I probably have. 
As a farmer I tend to think like a mechanic and I am constantly analysing things to see If I can figure out how to make things better.
Hi Dan- feel free to ask 
yes, I’m still seeing improvement but very slow…
I don’t see any change when I’m awake more, but I’m getting tiered and go to sleep much earlier than I used to.
I haven’t tried any specific diet - any suggestions on that area?
The fact that you are seeing improvement is FANTASTIC news to me. Thanks. I live in Wisconsin and it is quite cold right now. 25 below zero last night. I have noticed a difference when I am outside in cold weather verses when it is warm. Our house is also a bit chilly so maybe it is the temperature, BUT, I do notice that my issues are a bit less in the morning verses in the afternoon. I too get tired more and in the last 15 days have seen my nightly sleeep time go from about 5 hours a night to about 8 hours. So maybe that is part of it. But sleeping is painful. My arms fall asleep almost imdeietly and my lower legs to feet get stiff and start to fall a sleep. and my shoulders and spine from my shoulders up are painful as well. So sleeping is not a joy. As for the diet, so far, I noticed an improvement when I drink a lot of water instead of soda. For me, I drink club soda as it gives me the fizz i want with out the other stuff.
Hi Dan
I also see a major change (for the worse) when it is cold.
regarding body parts that are falling asleep- I used to suffer from it A LOT at the beginning, but it passed when I started to be more physically active.
by the way- I’m fighting it for 2.5 years and still not walking without a cane… so be patient
I am blessed in that I am able to walk and or waddle around depending on the day. And I can putts and do things for short spurts. So I am greatful for that. Right now I am off all medication for a bit just so I can see what is all there when I am not on medication. I see my general doctor on the 28th and I wanted to be able to tell him what I am experiencing without the pills maskin things. I am hoping that he will get me an MRI to see what is happening in the back of my head and spine.
Good morning Dan. Like others have shared, ADEM is an like a MS attack once resulting in lesion(s) on the brain and the subsequent result called a Traumatic Brain Injury (among other things). Get a referral to a Neurologist and among other things get that MRI. If you haven’t received physical, occupational and speech pathology then get that, too. My attack resulted in a TBI which brought symptoms like altered vision (black spots, can’t handle bight light), altered taste (reduction), altered sense of smell (reduction), altered sense of hearing (can’t handle loud noises, super-hearing), right side pain and numbness and tingling and spasm and dizziness, inability to handle stress, seizures and reduced memory. If you are in WI then you can head over to Marshfield or Mayo to get checked up and out. I’m in South Eastern Wisconsin so it is only -3F so I’m enjoying the warmth down here lol. Maybe there is some overlap with your stuff everyone is different and there is a lot of the same symptoms too. I also hang round the TBI groups because in my cause the TBI causes the worst symptoms and everyone is different.
Thanks for the input.