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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.
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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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I think I have or had adem. I haven't been the same since. Does it ever go away?
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1056589 tn?1273750702
Hi All,
I was originally diagnosed with Transverse Myelitis which is in the same family of neuroimmunolgic disease as ADEM.
Go to Myelitis.org
Theres a ton of really good info and resourses....It's specifically for TM,ADEM,NMO,Devics...
Take Care......
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1248341 tn?1268803945
four years and no new attacks or lesions going for MRI in next coupl weeks will update more then.

Santana8
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I am 29 yrs old and have possible ms or adem. two months ago, i woke up dizzy, lost peripheral vsion, could barely walk. Now the only thing that is positive is my mri with a lot of inflammation. negative spinal, neg evp. tingling legs wen i walk, eye blurriness at times, headaches, twitching, shaking, nausea. What is going on???
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1290512 tn?1272061331
Wow....and I thought I was the only one! 3 years ago I had a severe headache, visual disturbances and it wouldn't respond to anything.  MRI revealed 3 leasions and increased signal intensity in the brainstem optic neuritis-5 days of IV steroids andtapering and everything seemed to settle down.  Then got excruciating TN and was put on nerontin. No diagnosis given and was told to look at it as an isolated incident. 3 years later and I am writing from my hospital bed on another course of IV tmt. MRI scan showed 8 lesions this time, more signal intensity in the brainstem compared to last time.  This time was pretty much the same with headache visual loss but also mental confusion and no short term memory, bizarre episode where i stood staring at the microwave unable to remember how to open the door! So second diagnosis of ADEM as the lesions were not consistent with MS....????? So where to now.....look forward to hearing your progress.....
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1487882 tn?1288139385
My mom in her early 40's came down with a severe headache and three days later was in a coma for 6 weeks. They diagnosed her with ADEM but told us she would be a "vegetable" if she ever recovered. It has been about 4 years now and she's doing great. She can't fully walk and has memory problems and cannot feel her lower half. She has been trying to find someone to talk to who has been through the same thing.
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After several weeks in St Johns Medical Center, Santa Monica, CA, I was finally transferred to UCLA, Roland Reagan Medical Center in Los Angeles. My team of doctors lead by Dr John Stearn at UCLA diagnosed my condition as ADEM. I had several issues along the way from starting out with severe headaches to passing out, ending up in a seizure, then  an induced "coma" for 4 1/2 days. No body at St Johns had an idea what was my issue. With a great deal of luck it turned out that one of the top scientists in the field of MS and ADEM is my brother-in -law, Dr Lawrence Steinman, professor at Standford University. He recognized the symptoms and had me transferred directly the UCLA and put under the care of Dr John Stearn. Dr. Stearn's team did all the testing and confirmed the diagnosis. They resolved my issues and it is now 2 weeks since I was released from the hospital. I seem to have recovered from most all of the symptoms and I expect to make a full recovery. Life was hell for my wife, my children and as I was "not in my right mind", for me too.
If you may have ADEM get to UCLA in Westwood.
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1558027 tn?1294647592
I had a case of adem in nov of 2002. I had a bad  headache and flu like symptoms for almost a week. I wouldn't have gone to dr but I the symptoms were interfering with work so I decided to see one. At first the receptionist would give me  an appt but when I said to forget it because I was being a baby she gave me one. Good thing that the dr saw me because he ordered an MRI, lumbar puncture and a slew of blood test at the ER after work. The neuro there didn't know what to do with me or so I was told because I was out! I have no recollection of what happened. My family was told to get everything ready for the worse. The neuro saw swelling of the brain but no infection or virus was associated with it and then she sent me to a neuro in Chicago who cared for pts with MS. I was in a hospital for 3 1/2 weeks 2 1/2 of which I still do not recall and put on iv steroids on could only be monitored. When I awoke I couldn't talk or talk. I lost my peripheral vision and had so many emotional outburst. I was happy to be alive, mad or sad! I had physical, speech and occupational therapy too. My vision came back within a month I was able to walk without walk after a month, and both talk and swallow very soon too. The adem was caught early and my neuro knew what to do because adem is so similar to MS so he did everything just right! I had to continue to see him in case it happened again to rule out MS. It's not MS but I do have a leison on the left temporal lobe of my brain and have epilepsy. I was also diagnosed with ADHD. ADHD in the past was confirmed as a residual effect from encephalitis. I'm sooo blessed to have those two as the only residual effects from the case of ADEM I had. Does anyone have or know someone with ADHD after having ADEM?
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1558027 tn?1294647592
The dr I had is really good with MS. He was based out of Rush university's hospital but now has a clinic dedicated to care just for patients with MS  in a suburb of Chicago. I was sent over from the neuro in the first hospital I was in to the one he was in. His name is Dr. G Katsimakis. He is such a great dr and has an excellent bedside manner or so my family says he does. I can't remember!!!!
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1709567 tn?1308086830
I'm a 38 year old music producer. I had neck pain one day and was in a coma 48 hours later. I was diagnosed with ADEM and had to recover over 4 months. Started working again and is physically fine except. I have a Drunken feeling in my head. I notice that it is because of my right eye, jumping slightly. It has become better but has gone back to it's original state again over the past 2 months. It's now 10 months since it happened. As for mental issues - I seem to be very paranoid, and afraid of the future. My mouth is also still dry almost every day. I haven’t had another MRI yet. I used to be fearless of life but now I'm struggling. Please tell me you guys had a drunken head at first, that went away in time!?
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my brother was diagnosed in 2007 after going to the hospital and dr 's around here they almost killed him -he was only 25 yrs old at the time. For a few weeks he had pains and numbness -the dr's did mri and other test -still we heard nothing for 21/2 to 3 wks my mom kept calling -my brother steadily getting worse she took him to the hospital 2 times in one week and they turned him away and said it was the flu. My mom called me at work histericle my brother was in worse shape i went and we took him back to the hospital we waited in the waiting room for 2 hrs there was no more waiting when i picked him up he was turning a greyish tent and he was stiffing up he could not sit or move -i called my husband and he rushed my mom and brother to a hospital in st louis -that is the only reason he is still alive- i am convinced- dr's told mom that 12-24 hr will tell -they had only seen 1 case as bad as he was and the man bled out of the lesions -he was parylized -on vent-only could comunicate with his eyes yes -open no -closed-the treatments at barnes -as far as frestasis traetments i beleive really was a life saver -he had adem -i have pictures of what 3 wks after the pain and numbness start looks like -now he has full ms but is battling another strike of adem -he has a fever -i guess there is no certain number of times you can get it-he relearned to walk -talk and take care of himself -he still has balance issues but that goes with the ms -not even 30 and he is on disability and having problems off and on he takes infusion treatments for ms he tried every treatment now he is on the last resort- so yes -to answer the question adults get both and these are considered sisters .
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My Husband  has ADEM/MS This a very frustrating time, and we just want to know what we are dealing with
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My name is Oana and I am from Romania. I am disperate because my husband was diagnosis with ADEM in may 2011. We don't know sure if this is ADEM, or SM, from beggining was on tratament with solumedrol i.v. and now we ar at home, with medrol, and doing phisiotherapy and cognitive therapy. I am disperate, because is very very frustrating period in our life. i am excuse for my bad english, but this is forum where I find some information about this disease. How many time you think during this period, because in my country almoust nobodies knows about this. Thank you!
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Hi My sister in law has ADEM since Feb 2010 and I would like to help her as she has 3 children of which ages are 13,2, and 5 months old please contact me on e-mail ***@****
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1709567 tn?1308086830
It's now 11 months since I've been diagnosed with ADEM. I recovered pretty well. No medicine, just lots of vitamins. I've been working now for 7 months. Memory is'nt always as it should be, but okay. I have slight osclillopsia (google it) in one eye causing the drunkenness. No one knows this disease so I can only tell you about my situation. Don't lose hope!
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I've never been diagnosed with this, don't trust the medical community enough to visit them, but I can say I've been through it.  The cause, in my opinion is smaller than they can see, without an electron microscope.  It is various mycoplasmas.  I believe I first contracted mine from a typhoid immunization received in 1968 from the AF who came to my little Ohio town after a flood.  It was shortly thereafter that I started seeing floaters, developed tinnitus, and my joints began to deteriorate.  That was at age 11, by the time I was in 9th grade, my shoulders would fall out of joint.

Marius728, I went the route you did over 20 years ago.  Started megadosing on vitamins, minerals and amino acids.  I got bigger and stronger, but the unknown enemy within did too!  I noted a thickening of my skin at that time, thought it was from the improved nutrition, yes, and no.  It was a thin layer of the little vermin forming under my skin, as Johnathon Winters used to say, "All over my boooody".

About 8 months ago I began an antimycoplasma herbal regimen.  After 2 months of it, on Valentine's day, I felt like I was melting as all the little vermin in my upper body died and fell into my legs.  Also, I saw the last floater in my right eye change from a squiggly shape, pop, to fried egg shape, then pop, it was gone!

I still have tinnitus, though the volume is lower, and I still have floaters in my left eye.  But one does not eliminate something that has been dwelling in you for over 40 years quickly. I don't think the body could handle all the toxins released if they all died at once.
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My hushand and I were just told he has ADEM.He because sick why he was on the road.At  first he had a very bad backache.2days later I called him to see when he would get home .And he told me he didn't remamber where he was.And he couldn't fightout how to get help.I am 650 miles away looking for him In Iown someplace.Thank God for 911.Because a hour later I got him help.By that time he had numbness in his hands,feet and face he couldn't walk.By the time I got to him he had lost most of his memory he did know me .But couldn't remamber much more.He lost the use of his right side.And could not see.He was very confused.
He had 4 MRI 2 spinal Taps and CT stan Last the brain byosy in 12 days.
Day 16 he is in refab now.
His memory is lost he is confusion,He has no pain.He is standing with help.He can't get some word to come out .I am told that it could be years before he recover.But how much he recover is not for same.He is only 51 years old .I don't know the next step right not .Well he ever know me as his wife again?
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1812010 tn?1316573065
Hello, My son was Diagnoised with A.D.E.M back in 2007, which from my understanding is caused from school shots.  From my understanding A.D.E.M only happens to children from the ages of 2 yrs of age to 22 years of age, after that age it is considered to be M.S.  Me nor my husband had ever heard of A.D.E.M before this happened to our son.  God Bless
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Thank you all for sharing your stories on here. So sorry for all of you, but truly appreciate the information.  We just had a very strange experience. My sis LN I will call her lived with us, I got a call saying she was 'delirious' so I took her to urgent care, doc said she is dehydrated, take her home to drink water. She was very strange, forgot her nieces were in the car, was hungry but when in the bathroom for over an hour? I thought she wanted to take a shower? But when she cam out she had not... So, I took her to an ER, they treated her for dehydration gave 3 bags of IV released at 4am, then in the morning my husband noticed her walking funny, bumping into stuff, went in the bathroom turned on the water and left, real wierd. Also, 'hallucinations' I asked her where her wallet and keys were, she pointed to the table and said right there.. but nothing was on the table. Brought her back to ER late afternoon, also, she forgot names of our brothers and forgot I had 3 children, only remembered 2 which is unusual as she helped me care for them since birth. In ER they did a CT scan, did not notic anything, did a spinal, did not see any foreign, were thinking it would be bacteria or something. She was admitted, I came back to see her that morning, the nurse thought my sister was 'retarded' and just sick. I had to tell her my sis was very normal, very smart until yesterday. Unfortunatley this just happened on Labor Day weekend...Sept 2011, I recommend never getting sick on a holiday weekend. My sister rapidly deteriorated... no one really cared. We had a different nurse every single shift, the doc assigned came in once in the am for 10 minutes, started treating her for 'possible' viral meningitis and encephilitis. My sis was forgetting more and more, extreme vomitting, no anti vomit meds worked, we had to take her to the bathroom, it was hard to give her directions how to 'sit' on the toilet. For some reason she could stand but when asked her to lay on the bed, she would say, o.k., I am, but still standing, so took 15 minutes each time to get her to do something. Finally after the weekend and me going to patient advocate, and case manager, got the doc 4 days later, to call a Neurologist!!! Neuro finally ordered the MRI  I had been requesting, several lesions, also, the CT scan she had in ER on first day, there was a spot, but only a 'trained eye' could have seen it, also, my sis' work finally got a hold of me and told me, that she 'forgot' why she was driving, almost crashed, did not know where the freeway was, even though, she had just drove off of it??? I was so mad, I did not have that info to give the docs in the first place, that is why they just thought it was delirium from dehydration. SO>>> so many spots/ lesions on her MRI, they told us she must have a fungus growing or brain cancer and they need to do a biopsy fast. It was crazy, just sitting in a hospital room for days w/ no sense of urgency, now all of the sudden, my sis may die if we don't act quick. First brian biopsy, all they could get was 'normal' tissue, the machine was not working well, the MRI was blurred???? urgh... doc said he had to go back in first thing in the morning.  Second biopsy, all showed was demylein, similiar to ADEM. My sis is 23. But, now I know they did NOT rule out MS as they did not look for it in her spinal (CSF) or whatever. Now she is back w/ my mom as she needs a lot of support. After surgery, she did not know me, said she did not have a sister, but then 10 minutes later, she would know me. Very wierd. But, thanks to GOD, my sis this Sept... went from a baby, to now about a 15 year old. Talking to her on the phone, she will remember some things, has head aches, tinling, bumping into walls. the new neurologist, says she is FINE! Go back to work, Go drive!!! This man is crazy, as he did not even LOOK at her MRIs ... my mom had to help him find them on the disc. He just met w/ them for 45min and said come back in 3 months. Mean whild, no one has 'looked' at my sis' brain since, 2 back to back brain biopsys!!!!  That worries me. Ok. lot of ranting... but I have been searching for so many answers, I no longer have any faith in the ``medical field' although some doctors I encountered were very nice, I just don't know if they have/had my sis' best interest. In short, they say 'probably' ADEM.....
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My daughter is 21.  Perfectly healthy all her life.  On aug 14 she started getting very bad headaches.  Three days later she started to loose her vision in her right eye.  ended up in emergency room told us she has optic neurtis and that its probably first signs of ms.  wemt to ms specialist.  said he thought it was probably one time occurence according to mri lumbar puncture and blood results and also because now she developed the optic nuertis in the other eye.  Not typical for ms.  She has not other symptoms.  Just very tired and vision problems.  Going to do repeat mri in Novemeber.  What does everyone think?
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27 year old male.

I had pins and needles down the entire right side of my body and sever back/neck pains for over 6 months. Initially I was told things ranging from stretched nerve to bad eating habits.

At the six month stage I flew back home (was living in another city) as I was mentally not dealing with the problem very well. I went to see my family GP from years ago, and out of curiosity he ordered an MRI - legions were discovered and the initial diagnosis was MS.

I moved back home completely and undertook sessions with a neurologist. His first immediate thought was to treat for ADEM, of which I had never heard of before but sounded a damn sight better then MS. I was in hospital for 1 week - was given a high dose of steroids. After 2 weeks of being discharged, I was feeling in the right side of my body again. It gradually got better until 6 weeks post treatment I felt 95% again.

I still have 'off days' - the heat bothers me especially, and living on the Gold Coast in QLD means I do get some exceptionally bad days. Minor neck pains However, considering the alternatives I'm ecstatic  about the outcome.

ADEM has no controlling role in my life anymore and I love it. Give birth to my first child in September :D
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My so got ADEM from a scratch on his cheek.  The infection went into his eye before doctors would treat with antibiotics and by that point it was too late.  about ten days/two weeks later he started shaking and then his condition deteriorated.  He was at school and they said it was stress.  They gave him sleeping pills and antidepressants  a month later I went to see him by chance and I took him right away to my doctor.  it was ADEM.  Too much time had passed to be treated.  He could barely walk, he rarely left his room and he couldn't read because his memory was gone.  I insisted on antibiotics because he had high titres indicating infection and he did improve a bit, but did not improve on a subsequent course.  We did not think he would live an independent life.  Then we started him on progesterone and vitamin and minerals shown to impact brain development.  The vitamins had almost no impact, but the progesterone which was added after was miraculous.  Improvement was detectable in his speech within four weeks.  Within eight weeks he was able to function in society.  He has gone from non-functioning to living on his own.  He has now has returned to college.  he must work a lot harder, but he is able to pursue the same course of study.  It has been very difficult, and a very long heart breaking path, but we are at a point that we never thought we would make.    

Investigate progesterone and don't give up! medical studies using it for traumatic brain injuries are very promising.
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1337734 tn?1336238191
I wanted to bump this old thread tha I have just dug up. I was not a member of this wonderful forum yet when this being discussed. It really is a blast from the past for me. As I have posted before, my MS journey began 29 years ago when I was 27. As previously stated, it began with ON. 3 weeks later I woke up with a numb, tingling hand. Three days later I was rushed to the ER, unable to walk. I spent the next month in the hospital completely paralyzed. I was dx with ADEM and transferred to a rehab facility for 4 months. I continued with outpatient PT for a year. I was left able to walk slowly with a limp. I have continued to have left sided weakness. Things remained the same for the next 25 years, raised my 2 sons and taught Special Ed. The about 5 years ago, my mobility began
to worsen as spasticity in my left leg intensified. At tis point I went back to a neuro who ran many tests: MRI's & LP's. He dx me with RRMS about 2 years ago and began me on Copaxone.

I am rehashing all this because my neuro feels my MS is very untypical. My MS still presents itself only through left sided weakness and mobility problems due to left leg spasticity an left foot drop.

I am wondering if anyone else has MS which began with the very rare ADEM?

Thanks for listening,
Deb
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I know you posted this a few years ago but my husband had the same symptoms you discribe , sad to say he died from the disease. he was first diagnosed in Jan. of 2010 and was treated with steroids and it worked or so we thought. after 4 days in the hospital with IV steroides was sent home on a 10 day taper and by day 10 his symptoms returned and progressed very fast and once again landed in the hospital. and by Feburary 17 he was gone. He was also 48 years old. Did you ever find out what triggerd the ADEM?
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I know you posted this a few years ago but my husband had the same symptoms you discribe , sad to say he died from the disease. he was first diagnosed in Jan. of 2010 and was treated with steroids and it worked or so we thought. after 4 days in the hospital with IV steroides was sent home on a 10 day taper and by day 10 his symptoms returned and progressed very fast and once again landed in the hospital. and by Feburary 17 he was gone. He was also 48 years old. Did you ever find out what triggerd the ADEM?
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Hello there.  I know you posted a while ago, but I pray that you read this as my story sounds almost identical to what you described of your son's experience.  It sounds like you were your son's advocate much like my mother was mine. God bless her heart and yours.

Pardon the emotion in this writing tone, for many of my emotions are "coming back to me" so to speak as it has been one year since I was prematurely discharged from acute rehab after suffering an attack of Acute Disemminated EncephaloMyelitis as a 29 year old female.  Today is the last day of 2012, so what better way to end the year than to follow these conversations, now that I can actually verbalize "Acute Disemminated EncephaloMyelitis" and have been able to return to CSUS as the Deaf Studies Major I was preceding the brain trauma...? No better way, in my opinion, not now that I can actually say, "Acute Disemminated EncephaloMyelitis" and describe it in the most intelligable fashion for those I have deemed appropriate to know without shedding a tear.

Those who I have "deemed appropriate to know" are the staff members at the "Services to Students With Disabilities" who have helped me take advantage of their services, because, much like your son I must work a whole hell of a lot harder to achieve the kind of grades I achieved preceding the attack(s) of ADEM.  I am proud to say that I just achieved my first semester back with a "B" grade in the one and only class I took (which was an appropriate course load....although I can't really use the word 'load' since it was only one course!)...and that was without taking advantage of the services of the SSWD, which I have qualified for, and intend on taking advantage of in the upcoming spring semester.  It has always been difficult for me to admit when I need help, so this decision was ever-humbling.

THIS IS WHAT HAPPENED TO ME:
In December of 2010 I had a scratch on my cheek which became infected.  It healed twice and then became re-infected.  The spring semester of 2011 at CSUS became increasingly difficult for me, as I dropped two classes, including dance.  Everything which seemed so easy for me once before gradually seemed more and more challenging (mostly emotionally speaking).  I knew something was wrong, and my primary care physician diagnosed me with R.A. due to the high levels of imflammation revealed from a blood test, and recommended that I see a rheumatologist.  Foolishly I did not follow up with her (the rheumatologist), mostly for two shameful reasons: #1. I had an unreasonable fear of needles, (I whined like a baby about the blood tests I had already undergone) #2. My own vanity and need to keep a perfectly thin figure (steroid medications are often used to treat R.A.).

I believe my cognition began to deteriorate as I fixated on the physical symptoms I was experiencing while ignoring the mental changes.  I became delusional and irrational.  I broke up with my long time and very supportive boyfriend because I suspected that he was demon possessed.  How ridiculous!  He simply could not understand what was wrong with me, and neither could I. All he was trying to do was to help me, and urge me to go to the doctor to figure out what the hell was wrong with me, especially after I checked myself into the hospital for the first time in my life. I could not use the left side of my body to walk appropriately. However, by the end of the day at Sutter Memorial Hospital, I could seemingly "magically walk again", although I continued to experience pins and needles up and down my left side's limbs. I came up with every theory one could possibly conjure up to explain what I was experiencing from "problems with static electricity" (explaining the pins and needles) to R.A. (explaining the aches and pains and inablity to open doors using my left hand) to Lupus (which I am genetically predisposed to).

That was still the spring of 2011.  I did not suffer the most debilitating  "acute" attack until early November of last year.  Fortunately for me, I was visiting with my parents, who lived about 45 minutes away from my residence in Sacramento, CA.  Within a 72 hour time period my mother found me fully dressed, using the shower, and covered in feces.  According to her, my dear sweet angel of a mother for whom I am eternally endebted, I looked at her blankly and said, "Don't bother me, mommy, I am underneath the waterfall".

Needless to say, for myself and my family: It has been very difficult, and a very long heart breaking path, but we (myself, my mother, and my father as well as extended family in Pennsylvania) are at a point that we never thought we would make as well.  Though I did not have a healthy lifestyle preceding this inflammatory disease (I smoked cigarettes, drank coffee constantly, would not drink water for the life of me, had an eating disorder which had plagued me on and off since the age of sixteen, and occasionally engaged in recreational drug use), I can safely say that this has been the biggest hiccup of my life, which I believe has saved me, and perhaps brought my family closer.

For the new year I have one goal: To stay on the path I am on now. What matters is that I survived the disease, and have been doing everything in my power NOW to recover completely.  I do not smoke cigarettes, I am drug free, I take liquid multi vitamins, Myelin and Sheath support supplements, Fish Oil Omega supplements, I drink oxygenated water religiously, drink coffee rarely, AND have conquered an eating disorder which had plagued me since the age of 16. So all I can say now is thank God I was afflicted with this disease.  It may have been the most obnoxious hiccup of my life, but I believe it saved my life. I just got the results from the second MRI of this year which indicate that the complete change of lifestyle has indeed been beneficial as the scattering of legions which were present on the frontal lobe of my brain have mildly improved.  

This year I intend on focusing on only one thing: remaining ever conscious of my health and the preciousness of life. I will not date anyone for this one year (I have not been without a male partner for the past 15 years of my life, and I owe it to myself and to my potential future husband to use this year to rediscover the new and improved "me"). I will only focus on school (I really do and have always enjoyed it) and my health.  That is the only way for me to "give back" a little bit during this season of giving.

So again, pardon the heavy emotional tone of this response.  I do have one question for you.

Please consider this scenario first before considering my question:

What marked dramatic improvement for me during my stay in the hospital was what is referred to as a "plasma pherrisis".  Initially I was administered steroids to fight what was assumed to be M.S. after which my condition worsened.  After that I was first diagnosed with A.D.E.M. and administered the "plasma pherrisis" via spinal tap. Shortly thereafter I was able to use the left side of my body, and became more aware of my surroundings. There was a point where I thought that the current year was 1988, and that the current U.S. president was Jimmy Carter!!!

My question for you:

Would you mind sharing with me the rate of your son's improvement and MRI history as he has been using progesterone? I am so very curious, and perhaps it could help me.

Thank you for your consideration and God Bless!
Sincerely, Kasandra
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I just wanted to share one more thing which I found at //my.cleveland.org which may help others who have experienced ADEM:

ADEM is a rare disease, and so there are no well-designed clinical trials comparing one treatment with placebo, or one treatment with another. Everything we know about treatment in ADEM comes from small published series of cases, and there are no guidelines for treatment of ADEM yet.

At this time, intravenous methyl-prednisolone (for instance, Solu-Medrol®) or other steroid medications are the front-line treatment for ADEM. Usually these medications are given over a five- to seven-day course, followed by a tapering dose of oral steroids. The aim is to reduce inflammation and speed recovery from the disease.

Patients on steroids need to be monitored for increased blood glucose, low potassium, and sleep disturbance. There may be mood changes (irritability, crying, anxiety) when people are on steroid therapy. Other short-term complications of steroid therapy include weight gain, flushed cheeks, facial swelling, and a metallic taste (when using IV Solu-Medrol).

If a patient does not respond to IV methylprednisolone, the next line treatment may be intravenous immune globulin (IVIG). This is an intravenous treatment using a blood product which has been shown to reduce the activity in certain immune diseases, including ADEM. Treatment is usually given for a few hours daily over five days for ADEM. IVIG has the same risks as any blood product (allergic reaction, infection); it also sometimes causes shortness of breath due to fluid overload. Rarely, patients lack an antibody important to the system and may react more strongly to IVIG.

Another approach to treatment is a process called plasmapheresis. This is a treatment in which the blood is circulated through a machine that withdraws components of the immune system from the circulation, reducing immune activity. It is usually a process which takes a few hours and is done every other day for 10 to 14 days, often as part of a hospital stay. It may require the placement of a central venous catheter to allow for blood to be removed from the system rapidly. Risks of plasmapheresis include discomfort from taking blood, sometimes a tendency to bleed due to a reduction in platelets, and infections.
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Adem means icu.  I am recovering from it, i was in icu for 7 days and 45 days in hospital.  if you went to the dr or hospital with an "attack " iand walked out of there, you didn't have adem.   I hope this helps your questions.  Please don't make people who have already had enough anymore worried.
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Adem is acute, I am 28 years old and was diagnosed with it.  There are no months of symptoms and all that.  If you have any neurological problems that are on going you have something else.  I was sick with fever and ataxia for a week or so and then I woke up in icu with tubes down my throat.  I was in icu for 7 days and hospital for 45.  There are no attacks, it is more like one total rape.  I lost a ton of weight in the icu I'm 6'1" 135 now.  I just got out of the hospital I feel fine and apparently you need you CNS which I am without.  I can breathe and swallow and I'm working on the rest.  Look up black bag.  Trust me if something's really wrong with you, you will be in the hospital and there is no guessing.  I wish you all the best of luck and health, God's speed.
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I have poured over the posts! I'm 28, female, just got dx with ADEM in dec 2013. Lost speech, vision, swallowing, and function of my left side. All is back except I'm stil paraylized on the left side. I'm struggling with depression and feel very alone. I had to go to the ER tonight and when I told the attending dr. I had ADEM he said to me, what's ADEM? I just want to know if/when I'll be "normal" again. I have a 2 & 3 year old and have lost all my freedom and independence  bc of this. Help!
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Oh dear Angeleyekaylyn,

Do not feel alone! Although childless, I am a 30 year old female who was in a similar physiological/mental state as you were about one year and 3 months ago.

Prior to the onset of Acute Disseminated EncephaloMyeltis, I was an over achieving scholar.  I ended up with the left side of my body completely paralyzed as well.  After having read these posts which, in my opinion, over dramatize this auto-immune disorder, it is clear that every story is unique, and every individual has had different experiences...as this disease is very rare for adults to be afflicted and hence, is under-studied.

However, do not get discouraged...let me reiterate that you are not alone...in fact you have been quite resourceful and determined to recover to have even found this forum:) BRAVO!

I am in no position to "play doctor" or neurologist, however, I have met quite a few of these professionals, and have improved significantly after having adopted a gluten free life style.  This may not be the answer for you, nor the plasmapherrisis, which was life-saving/altering for me resulting in the almost immediate recovery/ability to use the left side of my body (at first, I was administered massive doses of steroids resulting in the condition worsening, however, many of these patients improved upon such steroid administering)

The most awesome hope-inspiring book I can recommend would be, Jill Bolte's Tailor's (Ph.d) "My Stroke of Insight".  This woman is a trained and published neuroanatomist with the most amazing story of recovery from a far more serious condition than either myself or anyone else who has joined this forum has come close to describing.  If she recovered like she did, and then proceeded to write the acclaimed best seller in the neuroanatomy world, you can recover too! And in far less time than it took her (eight years...with a far more serious and debilitating condition) You can be independant again, and be a PRESENT mother to your two and three year old.  Please believe in the power of positive manifestation, do not be afraid, and take comfort in knowing that I am nearly fully recovered, ESPECIALLY AFTER HAVING DISCOVERED MY GLUTEN ALLERGY (which, come to find is is ever-common among M.S. patients, and many have shown dramatic improvement, much like myself after having eliminated Gluten (wheat) from my diet and toiletry/beauty products...A.D.E.M. mimics the symptoms of M.S....HOWEVER FORTUNATELY FOR US, and everyone else afflicted, A.D.E.M. has NEVER BEEN KNOWN TO BE A LIFE LONG AFFLICTION. How Fortunate we all are to not be victims of Multiple Sclerosis:)

Think positively,
God Bless,
and know that you are not alone!

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Hi there! Been looking for ADEM survivors for ages!!

I'm 33yr old female- diagnosed in July 2012. Paralysis in right side limbs (slight numbess in left) blirred vision, raging head pains, and heavy fatigue.

Suffered for 2 and a half months as I slowly got weaker and all of a sudden (over 5 days) became paralysed! My GP didn't see the urgency in my tears of what was happening to me. My neurologists (I had 2 because I think I was an interesting case) said they think they "caught it in time" and bloods, lumber puncture, MRI, CT and no history of illnesses confimed it was highly likly ADEM and NOT a severe first case of MS.

I have my 3rd MRI mid May (keep your fingers crossed for me) and I am nearly there... Look 3 months to "move every part of my limbs- fingers, toes arm, leg... A further few weeks to sort of stand on the balls of my feet and write so my words could be read..

My vision is nearly back to normal. The blurryness went slowly and I'm just dealing with the later stages of light sensitivity! :)

I have my strength back but still have a little bit of "heaviness" in my leg and slightly in my arm (I need to push myself more to walk to loose the heavy weird feelings I think).

So its 7 months on from diagnosis. I have beaten a wheelchair, then a walking frame (hard with one arm/ hand but you gotta push yourself and be positive ay)

I didn't want to reply on a stick (thought it would deter me trying lol

Then... 4 months later, I started 4 hours light duties at my desk job... The first few weeks I flagged at half an hour but stuck with it... Then it'd take an hour before I was fatigued, then an hour and a half etc etc... Then 6 hours, then 7...

Really. Looking back (and I'm still recovering) I've been recovering for 7 months....and that's really no time at all, all things concidered! I hope all is well with you x x


Would love to elaberate, but I don't want to bombard you all... Please ask or talk to me about ADEM... I'm so sorry for everyone who has and still is suffering from this silly disease.

I would love to be a supporting ear for any off you!! Sue x
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Dear Angeleyeskaylyn (Kay Lynne with pretty eyes?),

Do not feel alone! Although childless, I am a 30 year old female who was in a similar physiological/mental state as you were about one year and 3 months ago.

Prior to the onset of Acute Disseminated EncephaloMyeltis, I was an over achieving scholar. I ended up with the left side of my body nearly completely paralyzed as well. After having read these posts which, in my opinion (simply based on personal perspective), over dramatize this auto-immune disorder, it is clear that every story is unique in its severity, particular dx/remedy, and every individual has had different experiences...as this disease is very rare for adults to be afflicted with, and hence, is under-studied.  It has taken me one year and three months to find a support system of the most appropriate professionals to assist in my recovery.  I am more than willing to share any of the information I have gained, and I hope that you do not hesitate to ask any questions.  Perhaps we could help one another?  I absolutely adore children and would love nothing more than to live vicariously through you!  

I am in no position to play doctor or neurologist. However, I have met quite a few of these professionals as I have had physical, cognitive, and psychological therapies. I have improved significantly after having adopted a gluten free life style. This may not be the answer for you, nor the plasmapherrisis, which was life-saving/altering for me resulting in the almost immediate recovery/ability to use the left side of my body (at first, I was administered massive doses of steroids resulting in my condition worsening, however, many of these patients improved upon such steroid administering…like I stated in the preceding paragraph, every story is unique)

Though I am not in any position to “play doctor or neurologist”, I am in a position to say that I have read a handful of the testimonials of M.S. patients who have marked dramatic improvement in their condition(s) upon adopting a gluten free lifestyle.  I have found these testimonials online at “medical.org” websites, such as this one.  In addition, I have sought the advice/treatment of the most appropriate professionals to assist in my recovery.  If you do not have the time, energy, or finances to afford the services of those who may be able to help with your depression, I would be happy to share what I have been made aware of with you.  I remember what it was like to not to be able to use the left side of my body.  I did not understand what was going on.  Honestly, I still struggle with bouts of depression these days, as I am certainly not the woman I was prior to the onset of Acute Disseminated EncephaloMyletis.  However, I have much to be thankful for, and have had a wonderful support system.  I hope that you have people in your life who love and understand you.  I cannot imagine what it would have been like to have had two children during the beginning stages of this disease.  I promise you, you are in my thoughts and prayers.  If you do regain your mobility soon (fingers crossed!), I recommend that you engage in any form of exercise feasible for you.  That is the one thing that has knocked me out of the bouts of depression I have previously described.  I am so very fortunate to have had the love and support of my mother who, to this day, still encourages me to exercise (now that I have fully regained mobility).

The most awesome hope-inspiring book I can recommend would be, Jill Bolte's Tailor's (Ph.d) "My Stroke of Insight". This woman is a trained and published neuroanatomist with the most amazing story of recovery from a far more serious condition than either myself or anyone else who has joined this forum has come close to describing. If she recovered like she did, and then proceeded to write the acclaimed best seller in the neuroanatomical world, you can recover too! ….And  hopefully in far less time than it took her (eight years...with a far more serious and debilitating condition) you can be independent again, and be a present mother to your two and three year olds, should you not feel confident with your maternal role now. Please believe in the power of positive manifestation, do not be afraid, and take comfort in knowing that I am nearly fully recovered. I wish to pay forward my good fortune in any way possible, so please do not hesitate to ask any questions.

I wish for you to regain your mobility as I have, so please read this which I found at //my.cleveland.org: (paragraph #5 refers to the plasmapherris which cured my left sided paralysis almost immediately. Maybe it could cure you…)

ADEM is a rare disease, and so there are no well-designed clinical trials comparing one treatment with placebo, or one treatment with another. Everything we know about treatment in ADEM comes from small published series of cases, and there are no guidelines for treatment of ADEM yet.

At this time, intravenous methyl-prednisolone (for instance, Solu-Medrol®) or other steroid medications are the front-line treatment for ADEM. Usually these medications are given over a five- to seven-day course, followed by a tapering dose of oral steroids. The aim is to reduce inflammation and speed recovery from the disease.

Patients on steroids need to be monitored for increased blood glucose, low potassium, and sleep disturbance. There may be mood changes (irritability, crying, anxiety) when people are on steroid therapy. Other short-term complications of steroid therapy include weight gain, flushed cheeks, facial swelling, and a metallic taste (when using IV Solu-Medrol).

If a patient does not respond to IV methylprednisolone, the next line treatment may be intravenous immune globulin (IVIG). This is an intravenous treatment using a blood product which has been shown to reduce the activity in certain immune diseases, including ADEM. Treatment is usually given for a few hours daily over five days for ADEM. IVIG has the same risks as any blood product (allergic reaction, infection); it also sometimes causes shortness of breath due to fluid overload. Rarely, patients lack an antibody important to the system and may react more strongly to IVIG.

Another approach to treatment is a process called plasmapheresis. This is a treatment in which the blood is circulated through a machine that withdraws components of the immune system from the circulation, reducing immune activity. It is usually a process which takes a few hours and is done every other day for 10 to 14 days, often as part of a hospital stay. It may require the placement of a central venous catheter to allow for blood to be removed from the system rapidly. Risks of plasmapheresis include discomfort from taking blood, sometimes a tendency to bleed due to a reduction in platelets, and infections.



Think positively,
God Bless,
and know that you are not alone!
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I woke up on February 8 unable to speak without slurring. I am a Special Education teacher and proceeded to attend work that day. It was also the dya of my son's 5th birthday party. I decided I would go to th ER after I had completed all of my responsibilites. U thought I was having an allergic reaction and my tongue was swelling. I went to the ER and they found "abnormalities" on my brain. Thsi began my 20 day hospital stay. I will skip over all of the horrible experiences I had int he hospital. The spinal taps, the MRI after MRI feeding tube, ventilator. I was taken by helicopter to another hospital. To Barnes in St. Louis one of the top in the U.S. They did a Brain Biopsy and did not find anything. I had a plasma pherisis (sp?) OT, PT, Speech. I was a miracle they claimed. I left the hospital with no diagnosis. I have fully recovered. I still have no diagnosis. He doesn't want to give me ADEM or MS. What should I do? My anxiety of it all is getting to me. I just want to know. Are there other people that are stuck between ADEM and MS? I DO NOT WANT MS. I was under a great deal of stress when this all happened. After it did, I quit my job and I am moving back to my hometown. I feel like it was God's way of getting me out of my bad situation and relationship.
I am also a single mother to my 5 year old and I am 28 myself. I was 27 when my episode happenend in Februrary. I received a denial letter from my insurance for Avonex because they reviewed my file and their diagnosis was ADEM this is coming from a panel of Neurologists. Who do I believe? I can't live like this forthe rest of my life.Sny advice? Suggetions?
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My 6 year old son is recovering from ADEM.  I has jerky/twitch eye and mouth.  Doctor has him on trileptical after discharge from hospital to prevent seize.  Do you have to take trileptical for your twitching? Thanks alot.
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Hello everyone,
I am so happy I found this discussion where most people understand how it is to go through an ailment like Adem. In 2011 I suffered from this. I had some kind of viral fever and was given medication which caused Adem. Only in a few days, I lost the ability to move my hands and my legs (with pins and needles in side them). I also lost vision and my hearing ability was somehow distorted. Only a few days later I also could not pee which resulted in a very painful procedure of having a catheter inside me. A doctor misdiagnosed me with MS and that of all was a very big shock to me. I'm so thankful to my God to not have suffered from MS because a second doctor then diagnosed me with Adem. Living in the developing world where the health systems are not at their best was itself a problem. Wrong medication and wrong diagnosis was a big problem itself. Being 18 at the time of this diagnosis I don't know if I am to be counted in the adult or the child category. I recovered quickly within a span of two weeks I learned to walk again (with the help of physiotherapy) and finally the right medication. I soon began peeing on my own as well. My symptoms seem to be quite different from everyone else but I understand the pain that all of you must have gone through. I just have one piece of advice for all of you which is that you MUST NOT LOSE HOPE. Adem is not fatal and in many cases not even recurrent. I see a difference in my life today as compared to the past but learning to hope through Adem is one thing I have learned. I wish all of you a speedy recovery
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My husband, 46,  had a massive seizure in May 2013, he was rushed to the local hopsital where they found a "mass" of white/grey matter on the right frontal lobe. He proceeded to have all the tests listed above and a brain biopsy. Nothing came back bad except his B12 was low and Vitamin D was very low. The neurosurgeon had never seen brain tissue quite like that and was quite concerned. We were reffered to Johns Hopkins in Baltimore, where he had several more MRIs and tests and was diagnosed as having ADEM. He had no symptoms whatsoever prior to the seizure, except for exhaustion, fatigue and more irritablility. No headaches, illness or anything we can think of. Now he takes Keppra for the seizure, a One a Day vitamin, exttra B12, and Vit D. Now we wait until the next MRI to see if the white matter has grown, changed or gotten smaller. I think I read everyone's posts, but I didnt read about anyones experience being like my husbands as far as no symptoms prior to the "attack" and as I can see very lucky for him he seems to not have any lingering side effects. Has anyone else had or heard of other individuals with only seizure being the "event"? Thanks so much and I wish you all good health!
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Is anyone still on here to talk about ADEM?
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Hi, I'm so glad I 've found this forum. My husband is suffering from post-ADEM and nothing is the same anymore. They don't know much about this disease and we keep searching for answers every day. It happened this May and it developed fast. He is doing better now but still having problems with spasmatic walk and coordination.
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Did your husband spend time in the hospital for brain swelling?  Mine is there as a type this and  on his 2nd day of a medically induced comma to keep his brain from swelling more and completely relaxed.. His also happened so fast, a week ago he was a work. They believe it is ADEM as well due to the brain swelling. Did your husband have any of this happen as well?
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I had a relaps this year in may and i was first diagnosed in may last year.Iwas better after a year of recovery.Now I still walk bad and my cognitive functions are not bad as they have been last year wht can I do to fasten my recovery

Joe
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have been diagnosed with  adult ADEM last year after 2 yrs of not knowibg if I have MS or ADEM.Im 51 yrs old,My neurololgist thinks imight have had a recurrent of ADEM  about 1  week ago He is now tryimh to see if its MS or ADEM  im mscheduled for a MRI of the brain this week because I have rfecurrent balance issues again I also woke up one day and try to get out of bed but my legs felt like rubber they couild not hold me up which lasted  about 3 hrs and im having dizzy spells  again numbness if mnyrt arm and tingling also  of my head then a burning sensation starts whitewolf 63
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Hello I had Adult ADEM 16 months ago after having the herpese zostra virus ( shingles ) I was treated with an intensive course of Acyclovir that made me sick and have diahorrea. 16 months on I still have muscle weakness and impaired cognitive disability and I still get very tired. My neurologist keeps telling me that I haven't got MS but refused to do any more tests. Totally fed up with the lack of help. Finally had NCS and EMG a couple of days ago and now awaiting results. How are you?
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Hi Im an adult woman who had ADEM 16 months ago. I also had awkwardness and clumsiness prior to hospital admission and lost strength on the right side of my body. I had nausea and depression and an itchy rash that lasted months ( turned out to be Shingles virus ) i had two hospital admissions. The first time I was sent home and told to see a psychiatrist !!!! I was gutted. After intensive Acyclovir treatment I was sent home from hospital. I still have right sided weakness and a facial muscle weakness ( unexplained ) Neurologist is usesless and doesn't know what he's dealing with !!! Having physiotherapy now and awaiting results of NCS and EMG test
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Herpes Zostra virus commonly known as Shingles triggered my ADEM. Because they thought I was too young to have it (48 yrs athe time ) it went undiagnosed. First was told rash was allergy and then a so called expert said it was eczema !!!  
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My symptoms are alsost exactly like yours and began wis ADEM. I have foot drop and right sided muscle weakness. MRI showed a lesion but neurologist accused me of moving in the scanner !!! Omg how insulting. Just had NCS and EMG and waiting fr results. Its been a long 16 months
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I have a relative who had adult ADEM. She was rushed to the ER due to sudden (serious) neurological symptoms and hospitalized for several months. She was lucky to make it out alive.
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I have it  Threw up for 2 weeks. While in ER, my left body side started becoming numb & heavy tingling.  No use of my legs, no muscle mass, but hoping after pain subsides elsewhere I can get re-hab treatment.  Walked one time while I was in my long hospital stay, thinking I was basically healed.  Went home and over did it. Now, during and after another long hospital stay, not walking. I was treated with a lot of steroids and removal of plasma and got new  I did not know during all that time that my nerves had never healed - recoated themselves.  So now still dealing with the head pain, tingling in hands, and no use of legs and feet. Trying to be patiet.  Will pursue therapy for my leg.

I, also, lost my site before, and got it back in 21 days. No damage to optic nerve  No white spots on the brain, indicating MS.
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I`m 34 years old femal, my 3rd daughter was born in Sep 15 and it started about 8 weeks after birth with a short cold of two days and a little fever. The next week I had the cold once again, felt very ill but after a few days I thought it is ok. The week after that I had several pain in my fingers and toes and went to the doctor to tell him. He said could be part of a flu and with painkiller it should be gone after a few days. Within 48 hours my bladder stoped working and I had pain in my feet and arms. I went to the ER and they told me there were nearly 2liters in my bladder. Then they send me home, to check that at my gynecologist and the urologist. They both told me, that it is not ok and send me once again to the ER, another Hospital. They checked my Symptoms and blood and send me home. They diagnosed only a cold and it should be better early with the pain Killers. Wasnt really good able to walk, but interested none there. after few days bladder,bowel,arms,hands and feets stopped working completely. The brought me to ER of a bigger Hospital. They send me into MRI and after day 2 they started the Prednisone for 7 days. after 5 days I was Standing for the first time on my feet and after 3 weeks left he Hospital. they looked for all the MS Markers. Did only find the MRZ Reaction, no O Bands, no higher cell, all the Tests for NMO also negative. Did now a new MRI because I had new Symptoms- also negativ. No new infammation in my brain or somewhere else there. I am very scared about that, my 3 babygirls are only 9 and 8 years old and the Baby next month 1 year. Missed nearly 3 Month of the life of my babygirl. I am not able to do all the homework completely every day, have to do it in parts over days. Did some one else have this? Best wishes and a lot of health to all here from Germany
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