Discussions By Condition: I cannot get a diagnosis.

help for my 16 y/o niece

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: kaykay61
  • February 1, 2008
  • 07:16 PM

My 16 y/o niece has been experiencing jerking movements of her right upper extremety, face and body in general constantly for over a week. She is on ativan every 6 hours to control the jerking. She is completely coherent when this takes place. The ativan makes her sleepy and she cannot attend school. She also has numbness in her calves and feet. She has had a fever and 13 lb weight loss prior to these jerking symptoms. :confused: They have run the gamet of testing and ruled out: encephalitis, meningitis, reumatic fever, hyperthyroidism, multiple sclerosis, autoimmune disorders. She's had two MRIs one of her spine and one of her brain. A CT of her brain, a spinal tap, two sleep deprivation EEGs and ECG a U/A , Blood Cultures, a CBC, a metabolic panel with electrolyes. Any ideas? I'm a pediatric nurse and can't even help her!
:( I forgot to mention that she has the worst headache ever as well.

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  • Blaze; you are spamming the boards with your LYME pastings. You keep telling everybody that they could have Lyme disease... and pasting the same stuff over and over. It is not very helpful , it is annoying; and it is a form of spam to paste the same answer over and over. Join Lymenet, even if she's tested negative for Lyme. Most of us have several coinfections to boot. When to Suspect Lyme: http://www.angelfire.com/biz/romarkaraoke/whento.htm Lyme Disease - A Hidden Epidemic: http://www.freewebs.com/teenswithlyme/index.htm Lymenet: http://flash.lymenet.org/ubb/ultimatebb.php Also, does she use a cell phone? I'm convinced my chronic Lyme is an offshoot of the wireless boom. It ruined my immune system. Neurological Effects of Radio Frequency Electromagnetic Radiation Relating to Wireless Communication Technology - Dr. Henry Lai Blood-Brain Barrier, Cellular Morphology of the Brain, Neural Electrophysiology, Changes in Neurotransmitter Functions, Metabolic Changes in Neural Tissues, Cytogenetic Effects: http://www.emrnetwork.org/research/laibrussels.pdf Neurological Effects of Radiofrequency Electromagnetic Radiation - Dr. Henry Lai http://www.emrnetwork.org/research/laivienna.pdf Memory and Behavior - Dr. Henry Lai http://www.emrnetwork.org/research/laiwho.pdf Electrical Sensitivity & Hypersensitivity: http://www.ei-resource.org/illness-information/related-conditions/electrical-sensitivity-&-hypersensitivity/ Bioinitiative Report: http://www.bioinitiative.org/report/index.htm
    TaylorDeelwithit 382 Replies
    • February 1, 2008
    • 10:06 PM
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  • sounds neurological... because of the one-sidedness of the jerking the numbness could be PN the headache.... sounds neurological Scary.... time and more scans of the brain and nervous system may be needed. Maybe get her to a great medical asap school hospital if she isn't at one already... or take her to st jude http://www.stjude.org/about I AM WORRIED ABOUT HOW FAST HER ILLNESS IS PROGRESSING. My 16 y/o niece has been experiencing jerking movements of her right upper extremety, face and body in general constantly for over a week. She is on ativan every 6 hours to control the jerking. She is completely coherent when this takes place. The ativan makes her sleepy and she cannot attend school. She also has numbness in her calves and feet. She has had a fever and 13 lb weight loss prior to these jerking symptoms. :confused: They have run the gamet of testing and ruled out: encephalitis, meningitis, reumatic fever, hyperthyroidism, multiple sclerosis, autoimmune disorders. She's had two MRIs one of her spine and one of her brain. A CT of her brain, a spinal tap, two sleep deprivation EEGs and ECG a U/A , Blood Cultures, a CBC, a metabolic panel with electrolyes. Any ideas? I'm a pediatric nurse and can't even help her!:( I forgot to mention that she has the worst headache ever as well.
    TaylorDeelwithit 382 Replies
    • February 1, 2008
    • 10:17 PM
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  • What thyroid tests did they do exactly? More specifically, did they check ANTIBODIES in addition to hormones?Hashimoto's Encephalopathy is a rare complication of autoimmune thyroiditis that can present with myoclonus (the jerking movements) and headaches, among other symptoms (there's a long list of possible symptoms it can cause, but each patient may have only a few and the presentation varies from patient to patient). It has occurred in adolescents, who are more prone to seizure activity for some reason. Thyroid HORMONE levels are typically normal (the patient is euthyroid) and so it is often undiagnosed (doctors are trained not to check antibodies until the hormones are off first).I myself had primarily fatigue, profound headaches, and ataxia, and it took 8 years and 8 neurologists to get diagnosed, because no one knows about it yet. This is a shame, since it really responds well to steroids- often just one pulse is enough.It sounds like she may have had a possible febrile illness that triggered this. I am not certain what kinds of infections can trigger autoimmune thyroiditis, or if this occurs at all. Alternatively, the fever and weight loss may have been from transient dumping of thyroid hormone that can occur at the beginning of Hashimoto's Disease (Hashi-toxicosis). This should have dropped her TSH, but maybe her TSH wasn't checked in time or recovered by the time the labs were drawn. For years I had symptoms of hypothyroidism but my TSH was always normal. In fact, I was told that my thyroid was "okay" at least six times, but subsequently learned that it was full of tiny nodules from the autoimmune destruction.Anyhoo, I don't know if this applies to your case at all, it's just a suggestion because I personally suffered a lot from having my disease go undiagnosed for so long. There's nothing worse than being neurologically ill with no explanation.If you'd like to learn more about HE, go to PubMed and search for it. Currently there are 147 articles on it.If it is not HE, it might possibly be some other kind of autoimmune encephalopathy, since it seems to have occurred after the febrile episode. Another thing to consider may be West Nile Virus, but it sounds like they may have already checked for this.I am so sorry you and your niece are in this predicament.I hope you guys get diagnosed soon.
    Anonymous 42789 Replies
    • February 1, 2008
    • 11:13 PM
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  • Has she had a hair analysis for heavy metals?If not, possibly mercury poisoning.http://www.heall.com/healingnews/may/heavy_metals.htmlHope this helps. Regards.
    TerryG 120 Replies
    • February 2, 2008
    • 00:45 AM
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