I am a 57 year old female who has been diagnosed with CNS inflammation. After reading a posting from this forum, Heidi - 1-24-1999, the response stated that a patient should not be left with a diagnosis of CNS inflammation; however, that is how I have been left as 2-6-08. On 11-11-07, I had a seizure while at a pro football game and was taken to HUMC where I was admitted for 11 days. During that time I underwent a multitude of tests to include CAT scans, MRIs, blood work, EKGs, lumbar puncture and was told that I have inflammation of the meninges and lesions on the brain. I was discharged from the medical center on 11-22-07 with Rx's for Keppra and Dialantin (3000 mg and 500 mg respectively). Initially, the neurologist and the neurosurgeon (who performed the brain biopsy) both thought I had vasculitis. Following my recovery from surgery, an angiogram was done on 12-17-07. The result did not confirm vasculitis. I had another MRI on 01-03-08 which showed no change from previous MRI on 11-20-07. On 02-05-08, while being weaned off of the Dialantin, the left side of my body went completely numb, and after discussing w/my neurologist, he suggested I go to the local hospital. Another round of testing was performed to include another MRI, which was compared with the previous MRIs and determined to exhibit no change. As of today, I've been told nothing other than that I have CNS inflammation and that I am a "unique presentation." It should be noted that the HUMC neuropathologist forwarded the biopsy samples to the Mayo Clinic for a second opinion. I'm told that I have abnormal cells in the spinal fluid and arachnoid; however, cancer has been ruled out. With the above background information and the fact that the only thing I've been told as far as a diagnosis is "CNS Inflammation", where do I go from here?
We DID get a report from the Mayo Clinic's Neuropathologist. Basically, it mirrored the HUMC Neuropathologist's report, which confirmed abnormal cells; however, no definite diagnosis. There was no fever following the seizure or during the 11 days in the hospital, or since. Also, I have been tested twice (once in Nov 07 and once in Feb 08) and both were negative. I have been told that there is no tumor and no cancer!!! My concern is that, my diagnosis seems to have been left at "CNS Inflammation", which according to a Dr's response I read on another post said "A diagnosis of CNS Inflammation is NOT appropriate."
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