ADULT ADEM OR MS?

[santana8]

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.

[Soozq81172]

I was hospitalized in January and quickly diagnosed with MS. Following my discharge, my neurologist changed the diagnosis to adult ADEM. There’s no divinities test to diagnose one from the other and I still have symptoms daily. ( much improved from my original episode) I went from sudden onset of falling and vertigo, trouble swallowing and speaking.. to  75% after 1 week in the hospital on steroids and a couple months at home with physical therapy.

[SusanneEtzel]

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

[Rhodesgirl]

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.

[Jenn1302]

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.

[Peggymousa]

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

[Peggymousa]

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 !!!  

[Peggymousa]

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

[Peggymousa]

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?

[whitewolf51]

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

[pulenta]

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

[EmilyChu03]

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?

[klapa]

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.

[Chele5785]

Is anyone still on here to talk about ADEM?

[Bella429]

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!

[ak590]

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

[hbui]

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.

[owensmommy25]

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?

[kjoflygirl663]

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!

[SuePooMcD]

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

[kjoflygirl663]

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!

[Angeleyeskaylyn]

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!

[Gmassoud6157]

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.

[Gmassoud6157]

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.

[kjoflygirl]

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.