Brain / CNS Tumors Support Group

My daughter had adem 6 years ago. She was treated with prednisalone (2 mg per Kg) for 3 months. The treatment was effective and she recovered. Since the adem was autoimmune in nature, the lesions continued for about 8 months, but in a very mild form. Adem is diagnosed with an MRI which confirms inflammation of the brain, and a spinal tap. Also, a bone marrow aspiration is sometimes done to rule out leukemia. The spinal fluid is screened for all known viruses, bacteria, fungus, microbes etc. If none are found, and the spinal fluid cell counts suggest that there is no infection, then adem is diagnosed. After that, the patient is carefully followed. If the adem reoccurs, the doctors become supicious that it may be some other disorder because adem does not usually reoccur. (just in a small percentage of people). Apparently, they are able to distinguish adem from other disorders such as MS by the pattern of lesions on the brain. If you are unsure of your diagnosis, you should get a second opinion at a regional medical center. Many doctor's have never seen adem before and don't know how to diagnos it. You should try to find a neurologist that has diagnosed this condition before. Hope this helps and good luck!

Wow that was great information thank you so much for it basil2000, very helpful!!! where was your daughters lesion? mines was in the cerubellum and there was inflammation in the thalamus area. It affected me to where it messed up my sensory and balance. The neuro didnt suggest any of the further testing for that.
I had a LP and it showed multiple bands in the fluid and blood but not a big amount the lab tech could not dertermine if it were cerebral or systemic something like that????? so they said I needed a clinical evaluation which my neuro has not believed me in my symtoms and anyway long story short he is now sending me to an ms specialist because he doesnt no what else to do.

My daughters lesions were located in the cerebrum, cerebellum, optic chiasm, and brain stem. Her initial symptoms were tiredness, lethargy, fever, headache, and an elevated SED Rate (120). Shortly after, her platelets were elevated and she became slightly anemic. All of the local doctors were stumped. For about 7 weeks, no one believed her symptoms either. Some people's symptoms never progress from this and they never find out what they had. Her symptoms did progress until she had hand tremors, body twitching, limping, blindness, confusion. It wasn't until then that she was taken seriously. At that point, she was admitted to Westchester Medical Center in Valhalla, NY by her neurologist and rheumatologist. The neurologist recognized the symptoms of ADEM. Her spinal tap had blood in it also, but we were told that they just did a bad job on the spinal tap and poked around in the wrong place. The most important counts are the cell counts. I cannot tell you the details but it has something to do with looking at things like neutrophils. Looking at the cell counts lets them know if it is likely to be an infection or an autoimmune problem. They also should have screened the fluid for all known viruses, bacteria, microbes, fungus etc. During her recovery, she complained of migranes and muscle stiffness. She only had the balance problems when she was in the hospital. She is currently struggling with some mild concentration problems and language processing problems in school. Other than that, she is fully recovered with no relapse to date. I don't know where you are located, but hospitals like Columbia Presbyterian in NYC should be familiar with ADEM. We went for our second opinion there. Also, Emma was screened for LUPUS also - it was negative. In addition, we were told that ADEM lesions follow a sort of recognizable pattern that differs from diseases like MS. Therefore, a good neurologist should be able the make the call. Hope this helps.

do you know what this pattern that is recognizable and differs from ms is? Thank God your daughter is recovering, I have not recovered fully and still have lingering symtoms, the only thing i think im doing better with is with my thinking and my speech. I am in arizona and I just got a call with the ms specialist for an appointment, they allready looked at my records and called for me to make that appointment, I guess if they didnt think it was anything i wouldnt have gotten it but im hopefull that they can help me, my symtoms are more pronounced when the fatigue comes on, the fatigue comes and goes some days worse then other. you have been a good help to me and now i know the neurologist that was attending me doesnt no much and i wasted to much time with him. He didnt look for any of those things you mentioned and I have the records of my first lab results where the neut and and another one was high low and white count was high and the hemoglobin went high and so did my blood pressure. I will mention that to the doctor when I get there. Thank you so much, if you remember anything else I will appreciate the information.. by the way how did your daughter get the infection and how old is she, poor thing

My daughter has problems understanding higher level speech and with concentration. Apparently, these are common aftereffects. My daughter was 5 when she got sick. The autoimmune problem was preceded by the flu virus. Often people will get an infection, recover for about 2-3 weeks and then start with the autoimmune problem. This is typical. In some people, the autoimmune problem is preceded by a vaccine. Check out this address online. There are some interesting videos and other information about ADEM. http://www.myelitis.org/adem.htm. The first video is a nice overview. The videos are listed on the lower part of the web page. Hope this helps.

Everybody's description is identical in that whatever is happening is effecting th "autonomic small fiber nerve system" you need ALL find a neurologist that specializes in AUTONOMIC problems - There is a link to autonomic doctors on the neuropathy group and a list of symptoms.

Next, make many phone calls to a new neurologist that specializes in AUTONOMIC. The people that answer the phone will say yes he/she treats Parkinsons = then keep calling. "Dysautonomia" is one term that you can ask if they specialize in it. It will take many phone calls.
The characteristics of this is that ALL tests come back normal, it effects your small fiber nerve system and everything you are describing above is identical. There are tests like the tilt table test that can confirm such as well as a skin / tissue biopsy - but usually no need to get a biopsy - the only thing that will confirm is if it's hereditary and if you in fact have nerve damage.

Go to the neuropathy group and look for the topics that have "autonomic" in the subject line. You will NOT have all of the autonomic / symptoms that are listed but many of them should sound familiar.

http://dailystrength.org/groups/ne...

:)