Medical Questions > Conditions and Diseases > Brain and Head Injuries Forum

Help W/diagnosis, Strange Neuro.symptoms, Petit Mal Seizures

Hey. I think I am finally getting somewhere after 5 years of trying to get a diagnosis...I have just had my first pain clinic appointment and have recieved an opinion by one of the top docs in the area. I was born with spinal meningitis and at the age of 14, came down with a mysterious virus. I was severely ill for about a month- in and out of the hospital, couldn't walk, no appetite whatsoever, prolonged fever that peaked at 105, etc. I was put through the usual battery of tests for epstein barr, lupus, different types of cancers, all sorts of different things. I remember thinking: "my worst nightmare would be for this to continue into something chronic".

I never recovered from the virus. Flu-like symptoms were replaced by increasingly strange neurological ones. Here are some of the symptoms: feelings of 'waking up' in places (disorientation), muscle spasms, burning sensations, one-sided body weakness and numbness, blurry vision in one eye, extremely strange visual changes and disturbances- sometimes things are drab and out of focus, other times it's like i'm on some sort of psychedelic- things are beautiful...Neon, glowing, pulsating...I am able to distinguish between colors in cases where nobody else can, watering and swelling of the one eye (everything affects the left side of my body only), multiple-chemical-sensitivity, blinking of my focus-field when I am not blinking my eyes (this one is hard to describe....It's as if i'm blinking...Or the lights are turning on and off in a split second), staring spells, confusion, difficulty in finding the right words, difficulty in moving my jaw after staring spells to form words, concentration problems, strange emotions in the absence of proper stimuli (sometimes I feel like somebody else is in my brain....And I do not have any psychiatric illnesses besides a mild ptsd stemming from trauma my illness has caused me), shooting pains in my arm and leg, edema, joint pain, stiffness, migraine, tension headaches, neuralgia, 'zinging' nerves (don't know how else to describe them), words constantly repeating in my head, limbs falling asleep, horrible sleep paralysis, waking up with headaches (left side of head), strange nightmares, vertigo, and swelling of the left eye, feeling worse after sleeping than after staying up all night. Often, I have a feeling of shaking deep within the left side of my brain (tremoring?) that runs up and down my arm and leg as well. Also, when I read, my vision blurs within 10 minutes (during a flare)....Sometimes I think this has to do with neck positioning although I am not sure why.


I can't think of anymore right now but there might be a few other things. I was misdiagnosed with fibromyalgia and atypical chronic migraines, and for a while was thought to have lupus. My mri is normal except for some lacunar infarcts- which my previous doctor had ignored. My new doctor says that the infarctions are not normal, and considering my symptoms, are characterisitc of a seizure disorder. She has diagnosed me with a central pain disorder which she believes is akin to post-polio disease...(post-meningitis in my case). She says that I do not have fibro whatsoever and that the old doc was an idiot for not paying closer attention to the specific neurological syptoms I have. She says that she thinks what is going on is a post-stroke disorder where I am having petit mal seizures (possibly during sleep as well as while I am awake). I was reading today about 'auras' (pertaining to seizures, not migraines) and some of it sounds very familiar.

Another thing I should probably add in here is that I am not sick constantly- I have flares that vary in severity. Sometimes it seems like certain neck movements trigger sypmtoms and can even start a flare- also certain neck movemenmts seem to coincide with shortness of breath? Stress and excercise can also trigger episodes. My flares last anywhere from a week to months. The initial onset of my problem lasted approx. 2.5 years without avail. I have tried every sort of alternative therapy out there and many different medications- many of which I have had rather severe allergic responses to. My last reaction was an extrapyramidal one to compazine (for headaches). It was terrifying.


I am scheduled for an eeg- my md is expecting to find absence seizures so she can start me on medication. If she is correct in her assumption, she says that many of the symptoms I have been experiencing for years will go away entirely or at least be lessened. I am a first time college student pursuing a double major in physics and philosophy and it is absolute hell dealing with this. I feel like my body is in constant battle with my will- well...I'm sure all of you are familiar with the feeling. She brought up a few medications I can remember- neurontin and gabapentin or something like that. I am currently taking oxycodone as needed for pain and am trying to come off of it as I feel it makes me rebound.....It works so well initially but the rebound negates the pain alleviation about half the time. I also take benadryl because I have found that it helps some of my symptoms, and medication for sleep as needed, which I try to refrain from taking because it gives me a horrible hangover.

I know this has been awfully long, and I appreciate any advice any of you could give me. If you would like to know what I have been tested for, I will most likely be able to answer any of your questions....Although you should probably assume I have been tested for most everything except perhaps the extremely obscure. I am hesitant (out of fear) but interested in hearing about the prognosis (long-term) of people with seizure disorders, as well. I'm 18 if it makes any difference, and have been 'sick' since age 13.

Thanks!!!


Jessica

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replied August 17th, 2005
Sounds an awful lot like the symptoms of ms as well. I think they need an mri and/or spinal tap in addition. Check it out, and hope for the best!!!
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replied December 12th, 2005
Frustrated With Vertigo, Nausea, Tingling In Head
Hi there,
i have been experiencing some weird sensations, nerve-like, throughout my body but the most challenging are vertigo when i'm in a vehicle (driving or passenger) -- it's like I blinked but I really didn't blink. But I have been describing it to my doctor as everything i'm looking at suddenly slows down then I get thrust forward back into a normal time lapse. (not sure if this makes any sense.) I used to drive a school bus; just called today to tell them I can't any longer because the vertigo sensation lasts the whole 2 hours and by that time i'm extremely nauseus, exhausted, and my head feels like it's in a vice. I also have neck pain with it, the very top of my neck where it connects to my cranium. Recently I just started feeling tingling all around my head, and my toes are going numb.
I've gone twice to the er, had normal heart workup, carotid arteries are normal, stress test passed, cat scan normal, mri/mra normal, chest x-ray normal, am waiting on eeg results. I also went to an audiologist who did 2 hours of testing on my vestibular system (balance/inner ear) and he's suspicious of an eye problem i've had that's worsening where my right eye is turning inward and its response to movement is slower than my left eye so oftentimes they cross. He says in a nutshell when the brain and eye signals are not "in sync" that could disallow a "balance" and therefore vertigo or vision disturbances could develop. (particularly while driving, which seems to be the only time I have the vertigo). I'm awaiting his "official" diagnosis from his review of the tests.
I'm scheduled for a neurology check-up in january, anyone have any ideas or suggestions?
Thanks!
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replied October 29th, 2011
Can you tell me what the diagnosis was for your illness? My 21 year old son has been sick for two years with some of the same symptoms. He has had countless tests, ... .
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replied October 29th, 2011
A year later I still didn't have a diagnosis so went to the Head of Neuroopthalmology at Mass. Eye & Ear Infirmary up here in Boston). He diagnosed with Myasthenia Gravis, an autoimmune disorder that causes sporatic and random muscle weakness in different muscle groups in the body. For the next 3 years I would get weak "spells" where I would appear drunk, slurring my words, my eyelids would droop and it took all my effort to walk a straight line. A year ago it switched completely over to the muscles in my eyes (ocular MG) as my vision one morning was so distorted I could only see straight if I closed one eye. That still seems to be the case and the neuroopthalmologist has fitted my eyeglasses for prisms and sadly I now have to look for another occupation, as I'm a proofreader and it wears my eyes out terribly. I hope your son gets the help he needs. All I can say is go to a big city doctor, don't mess with the smaller town docs if you're not getting a diagnosis. Good luck.
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replied June 23rd, 2012
I have almost all of the same symptoms especially multiple chemical sensitivity. I have overwhelming horrible, unbearable sensations throughout my body when I wake up. I have always thought I was having seizures of some kind. I have been like this since I was 15 years old growing up on Kauai downstream from where the jackasses were dumping Agent Orange, Super Orange, Blue, White, Pink and Purple in the Wailua River. I was also swimming in other streams in the mountains that were runoff from the same area. The mess was dumped from fixed wing aircraft in trade winds that spread it everywhere. I am 61 now. There is no treatment. They are waiting for us (and the vietnam vets) to die. Monsanto and DOW have bought all the university research programs.
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