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| Heidi |
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I thought I'd give a little introduction of myself first. I'm a 30y old, mother of two boys (1yr & 3 yrs.) and I live in New Jersey at the moment,
but originally came from Finland. We are here in the US for three years because of my husbands work. We moved here in March 2007 and I got encephalitis
in April 2007.
Last April I started feeling funny, I had a strange choking feeling in my throat, also felt very tired. I decided to see a Dr. because I was certain
I must have a thyroid condition, as it runs in my family. So I saw an internal medicine (and neurology!) specialist. She ran some tests and they all
came back normal, and also did an ultrasound of the thyroid, which was normal. I started having other symptoms like a racing heart, couldn't sleep,
anxiety and poor reactivity to things, I couldn't hear properly on the phone if there was noise around me, also sounds seemed really loud. I was seeing
spots, my legs hurt and twitched, I felt nauseous and dizzy and my temperature was up 99.6-100.6F. I was really absent minded and couldn't remember
things. It was really scary. My ears buzzed and I had very mild dull headaches. It felt like my head was on fire and throbbing. By then I had called
the Dr.s office a number of times to do something because I felt like passing out and felt really ill. I developed a tremor. The DR. suggested that
I had anxiety over moving to the USA and just needed reassurance that everything is ok' and 'maybe I should do something nice for myself, like go
to a hair salon'.
I switched doctors and I got a really nice Asian gentlemen, who took my case seriously and suggested seeing first an endocrinologist and then a neurologist.
He gave me beta blockers for my tremor and wished me luck. At this point I had a purple rash in my lower abdomen, but I thought it was an infected
hair follicle and didn't even show it to the Dr. Stupid of me.
Then I saw the endocrinologist, who took all possible hormone tests, pituitary tests and again the regular blood work. Nothing came up except a D
vitamin deficiency which was totally irrelevant. Well, she then suggested to see a cardiologist because of my palpitations and racing pulse. About
that time I had had it with struggling here in the US with insurance and traveled back to Finland. There I saw two Dr.s and a neurologist. They thought
I had a myocarditis and still tested me for a thyroid condition. Well, my heart was perfectly normal. I started to think I had just had a breakdown
because of all the stress I'd been having, but the constant fever and tremor didn't quite fit into it.
Then I saw the Finnish neurologist. He did all the basic neurological tests and they came back normal, but he said that I have 'organic origin fatigue
symptoms, which were caused by some unknown inflammation, virus or thyroid or heart inflammation'. And he left it at that as did I, because I had
recovered from the worst symptoms. I came back to NJ and thought that maybe the tremor and the other symptoms would just go away in time.
I had another appointment with my endocrinologist. I'm so happy that she insisted on my seeing another neurologist here in the states. I thought
that I'd go there and then that's the last doctors appointment I'm going to go to. I was so fed up with not getting any answers, except that I was
normal, but to my surprise the first sentence the neurologist said was that she thought I had viral encephalitis. It was a shock. I was so shocked
that I had been home alone taking care of two babies with something like that!!! And to find afterwards that the mortality rate is quite high was
shocking. The tests started and at this point four months had passed since the active stage. They tested me for Lyme disease in my blood and maybe
some other viruses but nothing came up and the Dr. told me that really blood doesn't show anything, it should be tested from the spinal fluid. But
since I was getting better they didn't do that. Luckily the mri was normal, but my EEG showed some 'irritation' to the brain. I'm going to get a 48h
EEG to get some additional information and to help the Dr. to choose a medicine if possible.
So it's been 5 months and I still have many symptoms. I have a small tremor, it can only be seen in my eyelids, but I can feel it everywhere. I have
terrible fatigue, still have an elevated temperature everyday, I have terrible mood swings mostly from anxious and angry to sad and hopeless. Some
days I feel like my old self. My hearing is still a problem, I get that buzz once in a while, then the sounds seem loud and speaking on the phone
is hard. I see spots, little clear ones which twirl and bigger black ones which slide. Also my memory isn't the same, it's more of a struggle than
what it used to be, especially my short term memory. Doing grocery shopping without a list is terrible. Sometimes my words get mixed up, like I'm
about to say socks and out comes pants. Most of these things I'm the only one to notice which is good, but it's annoying to me as I used to be very
different. I can read really good now, when I was sick it was terrible, I couldn't concentrate. I'm finding writing more difficult now, I seem to
forget letters from the end of words, but I notice most of my mistakes and correct them. I'm getting better but there are so many little things still
wrong with me and I'm so afraid I'll never be the same person I was before.
Now that I'm getting better it doesn't matter which virus it was. The neurologist said so. I did have a round rash with a little bump on the center
(not a bullseye rash though?) and also I had been sitting on the grass a lot with my kids (thank god they didn't get this!!!) in shorts and in April,
that's the start of the tick season, right? We have shrubs next to the playground in our building and the park we go to is next to a nature park with
deer. Thanks for reading my story!
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Heidi
New Jersey, U.S.A.
Posted: September 18, 2007 |
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