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  • Hashimoto's Encephalopathy

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    Old 10-10-2003, 11:00 PM   #1
    LisaMarieAndolina1
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    Exclamation Hashimoto's Encephalopathy

    To who-ever's reading -
    I am an 18 year old female, recently diagnosed with Hashimoto's Encephalopathy. I was reading this bulletin and saw some people talking about Hashimoto's thyroids and thought that maybe some people out there with Hashimoto's Encephalopathy can give me some advice.

    Hashimoto's Encephalopathy (H.E.) is A relapsing encephalopathy occurring in association with Hashimoto's Disease, with high titers of antithyroid antibodies. Clinically, the condition presents with altered consciousness, confusion, focal or generalized seizures, myoclonus, and episodes of stroke-like deterioration.. . .. . . this was easier explained to me as antibodies are getting confused signals from the brain and they are actually going up their and attacking it. . .. so ur body actually attacks ur own body.. . . SCARRRRRRY!

    what also scares me is that their are sooooo few people who are diagnosed this verrrry rare disease.

    It is also aggervating to be told that you have a disease that the doctors don't know much about . . . how you got it? . . they don't know . . . .how to cure it? . . . not possible.. . . ( from what they tell me )
    . . . I Have a Million questions and NO ANSWERS!

    -Now i live in buffalo, and because their isn't a doctor in my area that know how to even begin to treat this form of Hashimoto's . . .. and have to drive about 4 or 5 hours away to be treated.(the doctor that diagnosed me took a job in a different state)

    - the symptions that i have are headaches . .. . terrible ones. .. .shakes sometimes. . .. . tunnel vision. . .and sometimes my vision goes out of the clear blue. (also abnormal MRI . . . spoting) Also a test to see if the antibodies were in my blood stream showed twice that it was so high that it couldn't even be recorded. . (normal is between 0.0-2.0 , mine was 70.0< , too high to even record )


    - the weird thing about this is that other then the headaches and the vision i am perfectly healthy . . . nothing is wrong with me, i'm not different from any other teen girl. Actually- i'm verrrry normal, i have tons of friend and a boyfriend- a job - ( i put school off until jan. ) but other then that - normal.
    - i guess people take their health for granted until you get a wake-up call.

    please write back- i'd be intrested to hear comments or advice. thanx
    Lisa

     
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    Old 10-11-2003, 08:46 AM   #2
    midwest1
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    What a frightening condition! It must be rare... I've never seen it mentioned here before.

    A German study was recently done that concluded that supplemental selenium reduces the number of thyroid antibodies circulating in the bloodsteam. You should ask your doctor to look up the reference and find out whether your condition would be helped by adding 200 mcgs of selenium to your daily routine. The result of the study was published in the April 2002 edition of the Journal of Clinical Endo Metab, if you need to reference it.

    Best of luck to you!
    __________________
    "We can complain because rose bushes have thorns, or rejoice because thorn bushes have roses." Abraham Lincoln
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    Old 10-11-2003, 10:57 PM   #3
    Kaylene
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    Yes I can compare stories.

    After spending a year with severe vertigo then being treated for epilepsy for over a year, I went Doctor shopping ..... discovered the rare form of hashimoto’s.

    Very little was known about this condition..... I went Doctor shopping again…

    I found a South African Doctor that had many pioneering ideas - some very strange but one in particular that really helped.

    I have been able to cope with the treatment of Amitriptyline or Tryptanol as known by most. This is an anti-depression drug, but I only use at night. I get up to 4 hours sleep now, very minor headaches (this itself is a miracle, you would know that pain by now...), shakes and muscle quivers are rare now but I still need to concentrate with my vision and hearing though. Many other more embarrassing problems have eased as well.

    Type into google the words "Amitriptyline and chronic pain" and you will find this wonder drug helps many diverse symptoms.

    See you GP and get him/her to investigate whether you can trial it for a while it started helping me within one week.

    Good luck.
    Kaylene

     
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