I'd like to talk to someone my age so has ADEM

I acquired ADEM in April of 2013, at 54 years old. 6 months later, I am much better compared to where I was, although I am still dealing with symptoms. I liked to hear about other's symptoms. Thanks,

Lynn

Hi Lynn!

My name is Deborah and too was 54 when I developed ADEM. I am now 58 nearly 59 and coming up on my 5 year anniversary. My lingering symptoms are mostly pain and fatigue, but would love to talk more with you re the problems.

Deb

My hands feel like I have severe arthritis. I don't have any issues with fatigue. My husband is a Physician and has his own Vitamin line. I used to take some vitamins, but when I got out of the hospital, I just wanted to get better, so I told him to just give me what I should take. He gives me a hand-full of vitamins (big hand full) and I simply take them. I think my progress has alot to do with that and just better eating. I had a lot more symptoms 6 months ago, it's just my hands that I'm still dealing with. My husband did say last week that I seem to more emotionally sensitive since the ADEM.

Hello Lynn,
I just turned 58. It will be 4 years next month since I had ADEM. It took a couple of years for me to accept that I will never be the same person I once was. There are good days and bad days. Today, I have been off resulting in a few bruises. I just roll with the punches.my husband is very supportive when he sees me having problems and will step in and help me. Whether it is helping me find the words that won’t come or just saying I had better go take a nap. It is very frustrating to learn of things that I have over looked or just not thought of.
What bothers you?

Karla

Well I came down with ADEM in April of this year. I basically developed symptoms over night. I had heavy pins and needles (like when your feet are asleep) from the bottom of my feet to my waist. The next morning it was up to my chest. In a matter of a couple of weeks I lost function of my hands. My husband is a physician and ran all kinds of blood tests, which were all negative. Finally a radiologist found ADEM when my husband ordered a cervical MRI. That doctor told him to get me to the hospital so I can get the IV cortisone which was all they can do, apparently. Well after 4 1/2 days of that, 70% of the symptoms disappeared. I was told that all should clear up, but it could take 6 months. I'm at 6 months now. My husband read on the Cleveland Clinic site, that it could take a year. Compared to where I was 6 months ago, I'm doing good. I can use my hands (or flippers as my husband calls them), but I still have all the symptoms (feelings) in my hands. I'm just now, slowly, starting to type with more than 2 fingers. He noted to me just last week, that he thinks I might have some mental something going on. I apparently, am more sensitive. I do feel like words are coming somewhat slower, if that makes sense. It is alarming to hear you and a couple other people say, you still have symptoms after 5 years. I hope these hands clear up before that.

I do hope that your hands start feeling better soon. I never experienced that symptom. I had no feeling on the right side of my body for about 1 week. Weakness was my main symptom. The day I went to the ER all I was able to do was shuffle my feet. That morning Mike (husband) told me I had better go to the doctor but I said that I was fine and went on with things that were planned. When I got to work and my boss said that I needed to go, I called my family MD and was told to go to the ER. My bosses wife took me and was helping me get to the door. They came out with a wheelchair to help me. Then I realized that I was in pretty bad shape.
If you can read my whole story, do that and I won’t repeat myself!
Unfortunately, there is nothing we can do to make this all go away. It is nice to have this site to learn that we are not alone.
Have a good one!
Karla

Hi Lynn my name is Nejah I was diagnosed with ADEM oct 1 2013 I’m 49 yrs old very healthy women. Mine as well happened in a matter of 24hrs. It began in my back it became pretty hard to sit or lay I woke my husband 2:30 am to take me to the ER arriving there I started loosing feeling in my stomach slowly moving downward docs had no clue what was going took a CT scan blood test I could give a urine sample they out a cath in me 2 liters came out. Long story short sent me home with Xanax and Valium at this point we went home within hrs I was completely paralyzed from my stomach to my feet. My husband called 911 we were off to another hospital at the emt’s suggestion thankfully the proper test were given spinal tap blood tests MRIs cat scans the elimination’s began I was put in ICU with transverse myelitis the heavy steroid began next morning they concluded it was ADEM I had an antivirus med as well 3rd day my left leg began to move I was brought to a reg room had plasmapheresis every other day for 5 days 14 days in the hospital. My ADEM affected my spine I had 2 lesion on my brain and 5 down my spine it’s been 3 weeks today since coming home I’m pretty much back to normal except my right knee will still buckle at times and lower back aches after standing to long… I’m glad to here your getting better. Not enough out there about ADEM no real guidelines yet.
Nejah

They found lesions in my brain as well, but there are studies that show that migraine suffers have lesions all over the brain, which cause NO damage or show effect, so I don't consider them as part of ADEM. It was very frustrating because 90% (my opinion) of doctors know nothing about ADEM. From what we could find, Cleveland Clinic has done the most research, but it's difficult, because everyone seems to have different symptoms. I'm lucky, because my husband is a physician and he fought for me all along and he had never heard of ADEM until I got sick. ADEM was in my cervical spine region. Please keep me up on how you are doing.

Hi All!

I had one huge lesion in the medulla oblongata (the top of the spinal cord/base of the brain stem) and 7 small lesions in my brain which were ignored by my first neurologist. My initial diagnosis was influenza, when I fainted in line at the pharmacy. The second diagnosis two weeks later was MS. The third diagnosis after the second MRI was grade 3 astrocytoma with a 16 - 20 week survival time due to the location. After I moved into an informal assisted living situation 140 miles from my home, the new neurologist diagnosed ADEM.

I do not blame the initial treating physicians. ADEM is so rare and unusual an illness presenting with such a diverse set of symptoms that it is hard for even the best to figure it out.

John Hopkins has a Transverse Myelitis/ADEM department and has offered me the best info.

I am holding my breath, waiting for my 5 year anniversary coming up in January. At that point my risk of MS drops back to normal. I sure hope I will have no recurrence in the remaining 2 months.

Deb

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When I was in the hospital, the doctors tried insisting I had MS. My husband starting researching ADEM and MS. There is only one test that can be positive for MS and I didn't even qualify to take that test. They finally dropped it and left me with my ADEM diagnosis, which I preferred. We have a friend that got sick about the same time I did. She has not been diagnosed, but we have the same type symptoms. She was told she had a brain tumor and several other things. All of that was found to be negative. Like I said, my husband found most of his research at the Cleveland Clinic. Have you had recurring episodes?

Hello ladies,
I am 51 and a pediatrician. I have all sensory issues with My ADEM. I was diagnosed in August 2013. I am better but not100%. Fatigue and sensory loss have been my major symptoms. Not sure if I will ever feel normal again.

Hi Molly, My fatigue is gone, but my sensory issues are definitely still in my hands. I am using them, but the sensory feelings are driving me crazy. I simply try to think about the problems the rest of humanity is suffering from; and my issues in comparison are not much. At least...I'm starting to type with more than 2 fingers. ADEM does STINK, though. What I'm finding through this support group, is that so far, those getting ADEM, are children or 50 year olds. Wonder why?

Hi Lynn and company!

I have not had a recurrence per se. But the severity of my symptoms waxed and waned for two years seemingly at random. All of my symptoms retreated dramatically after I changed my diet once I was diagnosed with a severe gluten intolerance almost two years post event. I can tell within minutes if someone has contaminated my food with gluten as the pain and ataxia increase. I rarely eat anything anyone else prepares as a result. Eating out is a thing of the past.

My main lesion is above the transverse process on the left side of my spinal cord. The right side of my body and the left side of my head are affected. I have limited sensation on my right side below the neck. I have large areas inside my mouth without sensation. I have to be very careful while eating and try to not eat alone as choking is a real hazard.

The vagal nerve has been badly damaged so many of its functions do not work well - things like blood pressure, heart rate, kidney function etc, but only the right side. I have atrial fibrillation, a right foot drop, and cannot stand for any length of time as I will just pass out. I have had pneumonia several times in my right lung as the villa do not work well. I have muscle wasting on the left side of my face, a left eye droop and excruciating pain along the path of the 10th cranial nerve but again only on the left side of my head. The pain is controlled by Neurontin and Tegretol along with hefty amounts of ibuprofen and Vicondin after a gluten contamination.

I do not ever feel "normal" like I did pre-event. My neurologist told me what recovery I attained at the 3 year mark was likely all I was going to get. So I have learned to adapt. I go to the gym daily for a vigorous water aerobics workout - no longer have the balance for land classes. I do a lot of weight machine work with unequal weights to strengthen my weak right side. I can't restore the lost nerve function to my left face. My friends tell me it is barely noticeable, but I notice it.

The one thing that is most annoying is the loss of mental acuity. I can no longer remember names after one hearing. I learn more slowly. I can no longer recall immediately statistical references. Not the end of the world but still irritating.

Deb

I'm sorry your symptoms are this severe. I feel like I'm just belly aching in comparison. According to my husband, he is seeing a few little mental changes, but fortunately...he considers them as being "liveable". Isn't that nice of him? I think I am doing as well as I am, due to the fact that I lost some weight and I am taking better care of myself nutritionally.

Children or 50 year olds? Good question. My guess is an underlying secondary autoimmune issue which for me was a combination of nearly 0 level of Vitamin D and the undiagnosed Gluten intolerance combining to assault my central nervous system.

Deb


Lynn said:

Hi Molly, My fatigue is gone, but my sensory issues are definitely still in my hands. I am using them, but the sensory feelings are driving me crazy. I simply try to think about the problems the rest of humanity is suffering from; and my issues in comparison are not much. At least...I'm starting to type with more than 2 fingers. ADEM does STINK, though. What I'm finding through this support group, is that so far, those getting ADEM, are children or 50 year olds. Wonder why?

Be eternally grateful for that wonderful husband. Mine opened all the doors and gates and turned my dogs loose on the street when he heard my initial diagnosis. I am in the midst of a divorce - something I never expected. But his own issues prevent him from caring for me in the manner I now need. We remain cordial, and I do miss him a great deal. But he cannot step outside of his OCD problems to see that I can no longer manage what I used to manage.

To say ADEM abruptly altered my life is such an understatement. The physical and mental problems were just the tip of th iceberg. I now live 120 miles from my home of 30 years - away from children and grandchildren. The illness stole much more.

Nutritional support is key I think. I try to avoid animal products completely and always feel better on the days I adhere to the dietary suggestions from the China Study. Whole foods from safe sources are difficult and expensive.

Don't downplay your own suffering. I am reminded of Victor Frankel's statement in "Man's Search For Meaning" when he remarked that suffering is like gas in a balloon. It fills up the balloon no mater how large or small the amount.

Deb

My husband is a Chiropractor, a Nutritionist and has his own vitamin line, if you should or want some nutritional help. I'm sorry to hear about your other issues. That does not do anything for healing. Stress may have been a part of both of us getting ADEM.

Lynn

Deb,

I am very interested in your story. Were you ever in a coma? It has been 7 months since my farther was hospitalized first for a virus then swelling on the brain and was in a coma for over a month. He has since come out but is bed bound. he cannot move his legs at all. He sometimes seems like he understands what we are saying but mostly he just looks at us. He doesnt know what happened to him or where he is at. He is on his 3rd "rehab center" but has not improved. He has a trech, feeding tube and cannot swallow. My dad is 61 years old. He went into the hospital April 9th 2013. Any help you can offer would be appreciated. Colleen

I had one huge lesion in the medulla oblongata (the top of the spinal cord/base of the brain stem) and 7 small

lesions in my brain which were ignored by my first neurologist. My initial diagnosis was influenza, when I fainted in line at the pharmacy. The second diagnosis two weeks later was MS. The third diagnosis after the second MRI was grade 3 astrocytoma with a 16 - 20 week survival time due to the location. After I moved into an informal assisted living situation 140 miles from my home, the new neurologist diagnosed ADEM.

I do not blame the initial treating physicians. ADEM is so rare and unusual an illness presenting with such a diverse set of symptoms that it is hard for even the best to figure it out.

John Hopkins has a Transverse Myelitis/ADEM department and has offered me the best info.

I am holding my breath, waiting for my 5 year anniversary coming up in January. At that point my risk of MS drops back to normal. I sure hope I will have no recurrence in the remaining 2 months.

Deb

Colleen,

Have you looked into the Cleveland Clinic? I found online, neurologists that specialize in ADEM. If I were to see anyone else for my ADEM, it would be at the Cleveland Clinic as they seem to have done so much research.

http://my.clevelandclinic.org/staff_directory/specialty_search.aspx

Lynn

Hi Colleen!

I was never comatose. Thankfully, a set of circumstances placed me on a short dose of prednisone as the illness was just getting underway. I think that may have mitigated the overall severity.

Deb



Colleen Swarmer said:

Deb,

I am very interested in your story. Were you ever in a coma? It has been 7 months since my farther was hospitalized first for a virus then swelling on the brain and was in a coma for over a month. He has since come out but is bed bound. he cannot move his legs at all. He sometimes seems like he understands what we are saying but mostly he just looks at us. He doesnt know what happened to him or where he is at. He is on his 3rd "rehab center" but has not improved. He has a trech, feeding tube and cannot swallow. My dad is 61 years old. He went into the hospital April 9th 2013. Any help you can offer would be appreciated. Colleen

I had one huge lesion in the medulla oblongata (the top of the spinal cord/base of the brain stem) and 7 small

lesions in my brain which were ignored by my first neurologist. My initial diagnosis was influenza, when I fainted in line at the pharmacy. The second diagnosis two weeks later was MS. The third diagnosis after the second MRI was grade 3 astrocytoma with a 16 - 20 week survival time due to the location. After I moved into an informal assisted living situation 140 miles from my home, the new neurologist diagnosed ADEM.

I do not blame the initial treating physicians. ADEM is so rare and unusual an illness presenting with such a diverse set of symptoms that it is hard for even the best to figure it out.

John Hopkins has a Transverse Myelitis/ADEM department and has offered me the best info.

I am holding my breath, waiting for my 5 year anniversary coming up in January. At that point my risk of MS drops back to normal. I sure hope I will have no recurrence in the remaining 2 months.

Deb