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| Janna |
My name is Janna; I am a 48-year-old female living in Indiana, USA. I was diagnosed with ADEM (Acute Disseminated Encephalomyelitis) in July 2002.
In July 2002, I suffered from flu like symptoms for about 10 days. I begin experiencing other non flu-like symptoms, numbness in my face, and a lack of balance, mental confusion, blurred vision and a nasty little temper. I visited my family physician that recognized the problem as neurological and arranged for a neurologist to examine me in the local hospital's emergency room. I was admitted to the hospital immediately and the neurologist began a battery of tests, all returned as normal with the exception of the MRI, which showed 3 diffuse lesions on my brain. This neurologist was fresh out of medical school, admitted he had not seen this type of thing before, and stated that he would be sharing the MRI results with his medical professors for assistance. Based on his description of the lesions, they made a diagnosis of ADEM and suggested a regimen of steroids as treatment. (I call this a SWAG; scientific wild assed guess.) Once started on the Prednisone I responded immediately and had improved within 48 hours. I continued the steroids through the month of August 2002 and then tapered off them. I continued to stay fairly stable (although I did not really improve) until the middle of November 2002 when all the former symptoms returned with the addition of numbness throughout the right side of the body reaching the point where I could not recognize my own self. The young neurologist ordered another MRI, which showed a new lesion and no improvement of the existing ones. At this point, the young neurologist turned me over to his medical professor for continued treatment.
This neurologist is a professor of neurology/oncology at Indiana's medical research and teaching hospital. His main area of expertise is chemotherapy treatment (getting the right balance to kill the disease but not harm healthy tissue). He ordered all previous tests re-done; reviewed the findings himself and requested Mayo Clinic (another research hospital here in the Midwest) give him a second opinion. All tests returned as before, negative. His opinion on the MRI however was different. He agreed there was a new lesion, but he believed one of the existing lesions was enlarged. The doctor re-started the Prednisone treatment and I again began rapid improvement. This time the steroids were given to me at a much higher dosage and in varied ways. I continued to improve until the tapering of the medications began in January 2003 when I relapsed again. Another MRI was conducted with the results of another new lesion; however, it also showed a marked improvement in the previous lesions, with one actually shrinking in size. The doctor again returned me to the Prednisone treatment with higher and even more varied and unusual dosages. Improvement has been slow but steady and I have been tapering off the medication since the end of March 2003 with improvement continuing and no new difficulties.
My neurologist states he has not seen a case of ADEM that has gone over 7 months and he is hoping that I am close to being over the active disease and can look toward recovery. I am hopeful too. I do feel as if the steroid treatment has been a medical miracle for me, and I believe taking the Prednisone so early in the diagnosis is what has saved me from the damage many of us suffer from that I seemed to have been spared. Steroid treatment does not cure the disease, but does help limit the neurological damage done by the disease. I also firmly believe tracking the disease through MRI images has assisted the neurologists tremendously in being able to chart and treat the disease. The SWAG, it seems, has turned out to be accurate. They could not confirm ADEM through brain biopsy, as the lesions were too small to accommodate the biopsy needle. It is a diagnosis by exclusion, with the fact that the supportive treatment has been successful.
I wish you all the best of health. If you have specific questions of me, please feel free to email.
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Janna
Indiana, U.S.A.
Posted: May 17, 2003 |
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