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429949 tn?1224695179

ADULT ADEM OR MS?

HAS ANYONE HAD ADULT  ADEM? I HAVE BEEN DIAGNOSED WITH THIS FOR NOW, BUT NEUROLOGIST IS STILL CHECKING ME WITH REPEAT MRI's EVERY SIX MONTHS TO WATCH FOR EVIDENCE OF MS. HAS ANYONE GONE THROUGH ADULT ADEM OR HAS ANYONE BEEN STUCK BETWEEN THESE TWO DIAGNOSIS' S. AS  ADEM IS RARE IN ADULTS I WOULD BE THANKFUL TO TALK TO ANYONE WHO HAS BEEN THROUGH THIS ILLNESS AND CAN GIVE ME SOME INSIGHT.
62 Responses
Avatar universal
Hi in 2004 I was hospitalized with encephalitis and meningitis and with what they thought was ADEM. Later in October that year I had another attack and they confirmed that it was MS. I'm not sure how common it is to have adult ADEM. In a way I hope it is for you and not MS
429949 tn?1224695179
Do you know how long I've looked for someone who even knows what ADEM even is? Two years to be exact. It is more common in children because viruses and immunizations are more common in children. You said that you had another attack, do you mind me asking if it showed up on MRI as lesions. what happened in the first attack, and did they ever find what triggered it? Did they tell you how long it usually takes to have a second attack to make the dx of MS? Did they put you on any medicine for MS before the second attack? I'm sorry to ask so many questions, but maybe you wouldn't mind to help me to answer some of the questions that no one else would know unless they were stuck in this spot. I'm sorry that it ended up being MS for you. I have already began to try to prepare myself for this  , if thats even possible, in case it ends up being my dx. I joined a great forum on this site and if you are not already a member I would like to invite  you to join us. It is the Multiple Sclerosis forum, and everyone on this forum is very kind and supportive. I  will look foward to hearing from you, and thank you so much for responding to my post.
Avatar universal
Hi - Well my first attack started in April of 2004 with sever headaches and memory loss and after that I became very delisuional. I got admitted to the hospital May 4th of that year at they did the lumbar puncture and Mri's and that is when it showed up that the lesions showed up that looked like MS, but could be ADEM because I had no previous history or anything for MS. I have no memory of the hospital stay until about the end of July after they did a brain biopsy. They still don't know how I got encephalitis and meningitis or how long or why I got the MS. No one in my family has it. My second attack that confirmed that I had Ms was in October of 2004. I ended up in the hospital with optic neuritis in my right eye and I was having an dehydrated because I couldn't eat and was vomiting everything. My lesions in my brain were active as they say and I was then put on iv high dose steroids. I hadn't been on any of the abc medications until after the second attack. Then from January of 2005 until February of 2008 I was on Rebif. I know just had my third hospital stay for 5 days for the MS and I will be starting Tysabri on March 25th because the Rebif was raising effecting my kidneys. I am actually looking forward to not having to give my self a shot 3 times a week though. I am sorry that right now you are playing the waiting game and don't have a firm diagnosis. It's like limboland. try to take one day at a time not get to stressed (ha ha). Thanks I will definitely join the ms group. If I can answer any more questions I will. Take care and write anytime
429949 tn?1224695179
All your symtoms are just like mine,except I had a sudden onset in april 2006 when I was standing in the store. suddenly my vision became confused.   I could see the numbers on the prices but could not make any sense of what they said. Then over the next two days my vision was messing  up with distorted vision. things looked wider than they were, straight things looked curved and things looked out of line. then I had back pain, headache, shooting pain down my legs, then vomiting,diareah,rapid wieght loss, sevier depression,anxiety, a hyper state. I could not sit still. dillusional, suicidal thoughts, confusion, memory loss. then immediatley after this sevier light sensitivity, then numb eyes forehead and scalp. six weeks prior to all of this I had a medication change. I had been on the SSRI Zoloft 100mg for 14 years and xanax .25mg for eight months. This new doctor that I was switched to decided to take me off the Zoloft and xanax and switch it to paroxetine (generic paxil ) as he thought that it would take care of my panic attacks better. He did this switch without a taper. six weeks after this change is when this attack happened. After the numb eyes I had flashing fickering lights, blurred vision, and then in a week dimmed vision, almost black and white. dyslexia, right-left confusion, stiff neck sevier deep eye pain, dry eye, blepharitis( inflamation of the eyelids). I went to two ER's  the second one sent me to the    phyciatric hosptital thinking I was crazy. They hand cuffed me and took me in a  police car. THe doctor ther realized that I was sane and said my meds were messed up. After I  got back on my Zoloft and xanax All of the phyciatric symptoms stabalized, but my vision and some of the conitive issues remained. Ater six eye doctors that didn't believe me that I could n't  see right, because I had 20/20 vision finally gave me a visual field test that found a left inferior harmoneous quadrant visual field defect. Finally six months after onset I was refered to a neurologist. They done the MRI and found the white matter lesions. They also done a VEP which showed slowing in one eye. This neuro dx was MS and he sent me out of his office with a bag full of rebiff. I asked how he knew this wasn't infection in my brain. He said thats why we done the bloodwork, and then I said you didn't do any, he said we did't, I said No. He didn't even know that he hadn't done this. I got a second opinion and I didn't start the rebiff. The second neuro done bloodwork, and another MRI with and without contrast. bloodwork all normal MRI showed no enhancement of origional lesions. Then he don spinal tap which was negative for O banding that is usually found in MS. He also ran a poliomerce chain reaction  on the spinal fluid to check for viruses and other diseases, it came back negative.He has been giving me MRI's every six months for the last two years and they all have showed no new lesions and no change to the old origional lesions. I didn't get steriods because it took me eight months to get me to him because of the delay of the other doctors. by this time the acute phase had already passed and the steriods wouldn't help. all of my symtoms have been healing,all at the same slow slow pace without meds.
two years later I still have the visual field defect, but it has improved over the two   years and is still trying to improve slowly. the cognitive damage is doing the same. His dx for now is ADEM since I haven't had any more clinical attacks and nothing new on MRI in two years. If I do show any new lesions or enhancement or  another clinical attack he said  he would dx me with MS, but not until then.
Did you  have any of these symptoms? Do you think I would have had something new in two years if it was MS? My spinal tap didn't show meningitis, but it was 8 months later before I got it, so it may not have showed up after this  long. Did they find evidence of Optic Neuritis  on your fundiscopic exam? they never saw anything on my eye exam. My eye exam was completely normal. He said if I did have Optic neuritis it would have had to have been further back toward my  brain (reoubular neuritis ). I had all the symptoms of it but the only evidence that I may  have had it was the VEP   that showed slowing. Did you have any of these visual symptoms with the ON? Did you have a visual field defect? Did  you recover all of your vision? Did your origional lesions go away or stay the same? When you had the second attack was there new lesions? Did   you have any medication changes or any new meds prior to this? I'm    sorry so many questions, but I would believe someone who has been through this more than the doctors. Why did they do a  brain biopsy? I thought that was supossed to show for sure ADEM or MS. Did  you have this before or after the second attack? thank  you so much for your help with this. I hope it is not bothering you too much to answer these questions for me, but ADEM   is rare and there is not a lot of people out there who have been through this confusion over the two illnesses.  Again thanks for your help. Hope to hear from  you soon.

Santana8


Avatar universal
Hi- From What I can remember and all my medical records (and boy there is ton) in April of 2004 I started becoming very depressed and agitated and not eating just having memory problems too. I would go to work and not even remember being there. At that time I wasn't on any medications for anything. Eventually I went to my general doctor and he put me on Lexapro for depression. It got worse though my balance was off and I was getting really bad headaches and had light sensitivity as well like you pain in the right eye. It felt like I wanted to rip my head off. One time I had lost my balance and feel through my glass coffee table. I didn't hurt myself and got up and started to clean up and then passed out. Didn't even remember it. I was also having hallucinations auditory and visionary mostly at night and I was constantly responding to them and was not sleeping. My doctor thought I was having a psychotic breakdown. I guess for woman at my age if they are gonna have one that's when. I got admitted to the psych unit first, but the next day the staff found me unresponsive with a blood pressure of 76/44 and I got transferred to the ICU. That's how they figured out the encephalitis and meningitis. During this whole time I have no clue what's going on with me. I have no memory of it. All I know is what people have told me and what's in the doctor's report. I was at 4 hospitals. That last hospital I was at was the best at that was Rush hospital in Chicago were is still get treatment for my MS. They decided to do the brain biopsy in July of 04, which was before my 2nd attack. I think they decided to do it because I was in pretty bad shape in a sense, I wasn't really changing for the better and they couldn't figure out why my mental state was so messed up. I know my brain still had some swelling from the encephalitis at that time, but not much so I think when they did the brain biopsy it help with that. The biopsy really didn't show anything remarkable and they still don't know why I got better.

With the 2nd attack and the optic neuritis that sucked and the headaches were the worst. I could see out of my left eye great, but the visual fields in my right were very messed up. I had the VEP test and my reaction time were really slow and when the tested how the color red looked to me it was not hardly red at all. That's when I got steroids the first time. I also was having issues with vomiting that I still have to this day. That was one of the reasons I went into the hospital as well. I actually have been vomiting since October 7, 2004. Every time I eat I through up. My doctors have been all confused by that because they now ms can cause nausea and vomiting, but I don't get nauseas I just vomit. My vision all came back after I had the attack of the optic neuritis and it's been fine since. Since I've had the ms, I've actually decreased my medications. I take 225mg of Effexor for my depression and anxiety, 900mg of neurontin for nerve pain and headaches and 50mg of topamax for headaches as well. When I had this second attack there were no new lesions, and they did think 3 mri's to check that. I think it's great that your doctor is being very proactive in doing the mri's every six months that's a great way to stay on top of it. If I had to say I would think that you probably had or have ADEM because of the one time deal and no other attacks. I had my second attack 2 months after so it was easier for them to know, but then I hadn't had any problems for 3 years and then I had a relapse this year. So I think your safe, but it's good that you and your doctors are keeping up on it and you are getting all the information you can about MS and ADEM.  Please don't think you are ever bothering me with all the questions . To be honest I haven't had anyone to talk about it with either, no one ever heard of it that I know and honestly after a while I rally think people couldn't believe or understand what it feels like to go through something like what we went through and how it changes us and how we feel. Stress is another big thing to try to avoid with MS it's a trigger that makes us sicker. Naps are a big necessity too!! Which I like. What medication are you on? What sort of things are they recommending you do to stay healthy? Are you able to work? I had to do 3 months of physical therapy, speech therapy and occupational therapy when I got out of the hospital. I could barely walk. Sometimes on bad days or if I know that I will be walking a lot, I will use my cane, but most of the time I am ok. I hope you are ok and please write any time.
429949 tn?1224695179
Thanks for the information. I had the mental status changes too. I had the  mental status changes and the ON at the same time. It started in April 06 and had pretty much stableized by october of 07. But I didn't get any steriods. My brain  has had to heal on its own. In  April 08 it will be two years since this all stared and I still am not completely healed up. I still get eye and head pain especially when I am in bright lights for too long. Do you still have any eye pain? DO you have dry eye syndrome? Do you have any residual deficeits from this? I wonder if it has taken so long for me to heal because I didn't receive steriods? Did you  have a spinal tap? And if you did, when and what did it show? Did you have the O banding in your spinal fluid? I think I had meningitis too because I had a very stiff neck about three months into it. I still have this stiff neck that comes back sometimes. It will last for several hours and then go away. Same thing with the eye pain, IT comes and goes. I also have nerve tingleing in the back of my lower legs  especially when I take my clothing off of this area. I have It in my scalp sometimes when I brush my hair or get a hair cut. Anytime that the hairs are pulled up. My neuro says he thinks this is residual nerve damage. Did you have a stiff neck? If so how long did it take it to go away? OR does it come back the way mine does? I also have some cognitive trouble, concentration , memory, adding numbers ect...    Sometimes I feel confused or like I can't get my train of thought straight. I have had dyslexia to a certain degree. Overall my symptoms are healing at the same pace as though they are all a package deal. At the first and for about the first year I felt a lot of pressure in my eyes and head. Could this have been from my brain being swelled? It still makes me angry when I think about how sick I was and they didn't do anything to take the inflamation down in my brain. I have three boys to finish raising and they almost let me die. Do you have any kids?  Did all of your visual field defects heal all the way back to normal? I haven't been able to drive for two years and I miss taking my boys out to do things. I'm not complaining, I am thankful that it wasn't worse, but I miss driving.This all has been so emotionally draining, and I just want to feel normal again. But I know this may be normal  now. Did the third attack affect your limbs? Can  you walk now?  If you need to talk about it I am here! Talk to you soon.
P.S. you can private message me if you want. Just scroll over my name at the beginning of this post and It sould give you my message center. Check add as a friend and I will accept it when I get it. bye for now!
Santana( my real name is Carla )
Avatar universal
Hi again I will definitely private message you we have lots to talk about and lots in common. It's Sunday morning and I have to go to work (yuck) I couldn't drive for the over a year and when I did finally get to I had to take a special course to get my license back from the state of IL. I have no kids. (that's a story in itself I'll have to tell you about)

Talk to you soon (my real name is Patti)
Avatar universal
i was diagonosed with adem in may 2005 when i had approx 100+ lesions in my brain, my left side stopped, memory issues and my swallowing, hearing movement all slowed down. i was in coma for 2 days....my second mri a month later was worse but with physiotherapy and steroids i was up on myfeet and positive. it has been 2 years and because of my family, i denied taking any mri's till recently.

the reason why i took them is i had a problem--my right hand stopped working completely, pained like crazy and my left leg has now become numb with pins and needles for over 6 months now.

the mri still showed lesions. i was diagnosed with adem when i was 26. i am 29 now and have started having very bad off days, with numbness, neck aches, teeth pain etc.... the lesions have reduced in number but are still prevalent.

could this be ms?
Avatar universal
Hey.  I am an adult male, 48 years of age.  I was diagnosed with ADEM in May 2009.  I began suffering from really awful headaches behind my right eye, a tingling numbness on my right shoulder blade, loss of appetite, inability to focus, irritability and eventually psychosis.  I found it difficult to interpret things I was seeing (such as colours) and had difficulty communicating.  I could not take steroids due another unrelated medical condition.  I was in the hospital for a week and it took me a couple of months thereafter before I could start working regularly again.  My recovery was strange.  Many things seemed surrealistic and I had difficulty keeping myself grounding myself in place and time.  Very strange indeed. I have had no relapse fortunately.  

I am curious whether any other adults who have suffered from ADEM experienced changes in the manner in which they perceive their surroundings and their relationships with others.
Avatar universal
Further to my earlier post, in the months leading up to my ADEM episode, I began having difficulty in using my hands and arms.  Not numbness exactly, nor pain, just a strain.  I don't know if this makes sense.  Anyone else experience this sort of thing?  Before my illness became acute I tried speaking to doctors about this but they seemed to have difficulty understanding what I was talking about.

My sympathies to those who are still struggling with this bizarre illness.
1083604 tn?1256305270
29 years old, diagnosed with ADEM in January 2007. I've still got a lot of questions, but can probably provide a few answers too.

Avatar universal
I have been sick for over a year. Started with what I thought was a migraine and ended up in a nearly one month stay ay hospital. Blurred vision, stabbing pain behind left eye. Severe abdom pain numbness severe photophobia headaches speech problems confusion memory problems and a bunch of bs from doc. What the heck is this. Adem or ms?  HELP
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