Discussions By Condition: I cannot get a diagnosis.


Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: Tobylee
  • February 4, 2008
  • 05:30 AM

My 14 year old has started, out of the blue, suffering from mild seizures. She feels extremely hot and then has a mild seizure. A blood nose preceded her first seizure but since then she has not had a bleeding nose prior to the seizures, just a feeling of being very tired and then getting very hot. She was diagnosed with Chronic Fatigue about a year ago. She is extremely lethargic and has not been able to attend school since October last year as the seizures are very frequent and she is always extremely tired. She does not lose consciousness and sometimes seems to gasp for air. Please help. We have been to numerous doctors and hosptials and specialists and no one can seem to help.

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  • Does she get other problems as well headaches? sleep problems (including hypersomina etc etc), bowel issues, sore throats?? Obviously she doesnt just have "chronic fatigue". That's just a symptom... IF she has other issues going too on top of what you described, it's possible she has chronic fatigue SYNDROME. (This is a different illness than just "chronic fatigue". 2% of people with CFS get major seizures cause of it and 70% have seizure like eposides. (thou the bleeding thing I havent heard about so maybe she has something else??.. and besides, you didnt mention enough symptoms for her to have CFS). You may be interested to read my own recent thread.. about what may of been a type of seizure i had due to having CFS (I often have mind black outs and shaking and jerking) and see if it makes you think of the ones your daughter getshttp://forums.wrongdiagnosis.com/showthread.php?t=25600 For more on what im talking about .. check out http://wwcoco.com/cfids/bernesx.html IF she has more symptoms you didnt explain.. please get back to me and I'll try to help you find a specialist to see her for this condition.
    taniaaust1 2,267 Replies
    • February 7, 2008
    • 01:38 AM
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  • I don't know if this will explain the bloody nose or the temperature increase, but there is one disease that can create a chronic fatigue like picture and also cause seizures- especially in adolescents.It is called Hashimoto's Encephalopathy. It's a rare complication of autoimmune thyroiditis, and most neurologists have not heard of it yet.It is diagnosed by checking thyroid antibodies- those to thyroperoxidase and thyroglobulin. Doctors do not normally check thyroid antibodies until the thryoid hormones come back abnormal first. But many HE patients have completely normal thyroid hormone levels- yet their antibodies are high.I had completely normal thyroid hormone levels for 8 years, and during this time I ran from doctor to doctor trying to get my chronic fatigue-like illness diagnosed. I was told repeatedly that my thyroid was okay. But after getting diagnosed with HE, they did a thyroid ultrasound which showed it was full of tiny nodules from the autoimmune destruction. Thus, it is very possible to have a thyroiditis that does not get picked up by hormone levels. And a lot of cases of HE have the encephalopathy preceding overt gland failure by many, many years. They still do not know how the thyroid antibodies are related to the brain inflammation.I never had seizures with my HE, but they are present in at least 50% of patients with HE, especially adolescents. HE can produce a wide variety of symptoms. Each case is different and you can have some of the symptoms or a lot of them. It all depends on how badly your brain is inflamed.I don't know if this will be helpful at all, but I'm pretty sure your daughter's doctors have not looked for HE yet. It might be worthwhile looking into, especially if any of your daughter's relatives have a history of thyroid problems or any other autoimmune diseases.Good Luck to you. I am sorry you are going through this and don't have an explanation yet.
    Anonymous 42,789 Replies
    • February 7, 2008
    • 01:50 AM
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  • Has you child been screened for epilepsy, also Tourette's syndrome?
    aquila 1,263 Replies
    • February 7, 2008
    • 08:35 PM
    • 0
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  • Although I can't help with the Epilepsy, I can point you to a virtual charter school so your child can continue school without interuptions...check out www.k12.com. She also needs to get on a 504 plan because she qualifies.they have charters in half the states; if they are not in your state, research virtual charter schools to keep her education up. You local school district is also required to send a teacher out for a few hours each week to teach her at home since you have a medical excuse.I would keep a daily journal so you can pinpoint what is going on with the child. In it I would write down what she ate, where she went, if she used any finger nail polish or was exposed to strong scents, etc...that way perhaps you could find out what the trigger is and eliminate it...perhaps it's pop or being around cigarette smoke...
    Monsterlove 2,921 Replies
    • February 7, 2008
    • 09:09 PM
    • 0
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