Really bummed here.
I was diagnosed with Celiac disease (intolerance to wheat) about a year ago. Ceasing eating wheat cleared up my abdominal bloating and distress. All was well until last Jan.
I had what I believe was a seizure, very tired the evening before, didnt sleep all that well. Woke up in the AM, had some pankcakes, then BAM! Slumped in a chair, shaking on one size with my limbs, nausea, a feeling of extreme foginess, etc. Tingling in the extremeties (peripheral neuropathy.) Went to the ER. Upon arrival at the ER, I had another episode--what I believe now was a simple, partial seizure. I never blacked out, I was always aware of what was going on for the most part. If I did close my eyes, it only happened for just a few (2-5) seconds. They took me in, ran blood tests---sugar, electrolyte levels, all ok, nothing abnormal or outside range. Ran a CT scan--looked ok they said. They gave me some narcotics and some dilantin and a referral for a neuro meeting. ER Doctor said that he did not think it was a seizure, but he didnt know.
Soooo, went back home. Felt fine for a few days, then I felt a bit "weird"--I sometimes feel this strange sensation. I have seen is called an "aura" on line with a feeling of weirdness, nausea, weird smells, etc. I went to sleep, but woke up later ok.
Over the course of the next 6 months I've had a few of these attacks--some stronger than the others. All have the weird feeling, only a few have had jerks, always they go quickly.
I saw a neuro for an EEG, the first one had a weird spike, so they ordered another one, results looked ok but the neuro gave an OK for a more advanced neuro to take a look near the big city where I live close to.
He examined the original CT scan and listened to my story, took notes, etc and then said well it doesnt sound like a normal seizure to me, but why dont you come in for a multi day--sleep deprived--brain wave/eeg scan session. Going to do that in a couple of weeks. SO fast forward a couple months from that last meeting with the neuro.
Well, just last week I have had several episodes, some with the quick seizure and the leg and or arm jerking. I feel like ***l afterwards, foggy, extremely tired, out of it.
Today I felt it come on like a ton of bricks! One side of my body felt numb, tingling all over, nausea, some slight shaking, trouble walking, felt really really foggy and out of it. I was taken to the ER where I promptly slumped into my chair. Again, blood tests ok, no CT this time. They wouldnt do an MRI.
I am at my wits end. I am a Celiac and am wondering if the disease has done permanent damage to my neuro system. Will this ever end?
Can I take anti seizure meds and have a somewhat normal life if this is the case?
Anywhere where I could turn?
Please help............thanks in advance!!
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