Encephalitis Cases
Nicola
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My name is Nicola, and I live in rural Boone County in northern Illinois, just a couple of miles south of the Wisconsin border (not too far from Rockford, IL). Oh Feb 16, 2011 I was at work when I suddenly lost the ability to speak, got hit with a headache, and began to have balance problems. I was taken to the ER from the office, and was evaluated for what appeared to be a stroke, but the MRI and CT showed no evidence of stroke. I have never returned to work since that day (I'm an attorney at a large law firm) because I continued to suffer escalating symptoms including transient aphasia, in addition to concentration and memory impairments. Within a couple of weeks I began to have seizures and involuntary muscle jerks (myoclonus). My first neurologist dilly-dallied around, never gave me a complete neurological exam (he only checked my reflexes by tapping my knees). He eventually hospitalized me for a 4-day VEEG when my seizures worsened, and although the EEG showed focal slowing in the left part of my brain, and although I began having seizures repeatedly throughout the day and night while in the hospital, his conclusion was that I should be discharged from the hospital and sent to see a psychiatrist. Fortunately, my daughter (an ultrasound tech) was aghast and demanded a different neurologist. When the second neurologist came in and looked at me and scanned the results (I was still in the hospital) he ordered lab tests and got on the phone to arrange for emergency transport to a university hospital. There, they got the lab results order from neuro #2 which showed antithyroid antibodies. They discovered my reflexes were entirely wacky (whole teams would come in and do a "watch this!" check of my reflexes, showing one another how bizarre they were. "Did you see that?" they would whisper to one another.) They did a boatload of tests, including another VEEG, SPECT, CVS analysis, MRI, CT, etc., etc., and after five days, they started me on IV high dose pulse steroids. Within 3 days my speech was normal, my myoclonus had resolved, and my balance had improved. My memory also improved to the point that I could recite back a string of 7 numbers (forward or backward), whereas previously I couldn't reliably remember 3 numbers (or words). I was discharged with a diagnosis of SREAT (the new designation for what has historically been called Hashimoto's Encephalopathy, an auto-immune type of encephalitis). My challenges now include dealing with the return of some of my symptoms as they taper me off the steroids. Memory formation is terrible, and the only way I know what I did throughout the day is by taking constant notes. Concentration is terrible, and staying on task is seemingly a thing of the past. Fortunately, my speech remains flawless, for which I am eternally grateful. Balance comes and goes, which is actually worse than having it be bad all the time because I have this false sense of security which is regularly punctured by my suddenly losing my balance and starting to fall. I try to remember to use a walking stick when outside, since the uneven ground is the worst. Obviously all this makes it impossible for me to work as an attorney, so I am facing the need to let go of the "need" to be practicing, for now anyway. Part of my sense of self is tied up with my career, so there's that too. And of course there's the uncertainty. HE is a relapsing and remitting condition, and I'm not out of the woods yet. A crystal ball would be nice, but I assume there's a very good reason why we are not given the ability to gaze into the future and must instead content ourselves with the day at hand. In terms of things I'd like help for, or information about, I guess I'm just an insatiable researcher (even though I now can't remember much of anything I find unless I print it out or write it down!), so I'm interested in learning all I can about the E recovery process, strategies others have used for adjusting to their limitations, and of course what therapies people have found to be helpful (or not!) My talents are...well...I'm still a terrific researcher. It was one of my great strengths as an environmental lawyer, and I used that talen in my representation many large corporations, units of government, etc., in environmental matters, so I have a lot of experience and expertise in ferreting out information. Post E, I still know how to research -- it's just that now I just have to be MUCH more vigilant about keeping detailed notes as I go, rather than relying on my mind to simply remember the trail. (It won't.) I'm happy to volunteer to research anything that needs researching. :) Guess that's about it for the "who I am" story. I'm glad to be here, glad I did not suffer (much?) permanent brain damage, and glad I have a treatable condition. Not much more to say. Nicola Illinois, USA  Posted: Dec. 11, 2011 |
