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  • Hashimoto's Encephalopathy - Misdiagnosed

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    Old 10-11-2003, 12:38 PM   #1
    LisaMarieAndolina1
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    Location: buffalo
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    Post Hashimoto's Encephalopathy - Misdiagnosed

    Hello-
    I am an 18 yr. old female - I recently signed up for this message board. I have yet to see anyone talk about Hashimoto's Encephalopathy . . . it is an autoimmune disease and it is very misdiagnosed.(Hashimoto's Encephalopathy (H.E.) - 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.)
    Some symptoms are :
    Confusion
    Disorientation
    Psychosis
    Hallucinations
    Coma
    Tremors
    Convulsions
    Cognitive Difficulties
    Concentration Problems
    Attention Span Problems
    Difficulty Retaining Information
    Short Term Memory Problems
    Seizure Activity
    Myoclonus - Rapid, Involuntary, Uncontrollable Muscle Jerks or Spasms
    Dementia
    Fatigue
    Coordination Difficulties
    Headaches
    Episodes of Stroke
    Episodes of Stroke-Like Deterioration
    Right Sided Hemiparesis - Right Sided Partial Paralysis
    Left Sided Hemiparesis - Left Sided Partial Paralysis
    Aphasia - Speech Difficulties
    Articulation Difficulties
    Word Finding Difficulties
    Fine Motor Movement Problems - Coordination of Arms, Hands, Fingers."

    I was diagnosed with this disease about a month ago after undergoing a loooong list of testing to rule out other types of diseases such as M.S.

    This disease is so misdiagnosed because the symptoms can easily be blamed on other things. When i first started going to the doctors - i went for bad headaches. . .my doctor couldn't explain it so he blamed it on stress . . . ( i'm 18 - my stress is what out-fit i'm going to wear hahah ) anyways- a few monthes later the headaches were accompanied by tunneled vision and loss of all vision from anywhere form a 1/2 hour to 3 hrs. - then tremors. The doctors told me that the tremors were probably shakes from not eating . . .and the vision was because of the headaches. I then went to a nurologist after having an MRI done- his sec. was my cuzin and she got the report to us before he actually explained it. It came up abnormal with spoting. He never told me anything about it. He was in the room with me for about 2 min. told me i was pretty- kissed my hand and said i was fine.Now knowing that the MRI was infact abnormal my mother and i went to another doctor. He was amazing- he told me as much as he knew about what was going on- he would spen hours explaining - then the last blood test showed that i had antibodies in my blood streem. More that can be recorded on the chart. I went to double check if it wasn't a lab mistake- it wasn't.

    The problem with this is that so few doctors know what this disease is that they don't screen for it. and the symptoms are so common that you could spend a long time being treated for all the wrong things. This disease does not have a cure from what i am told - and if not treated early the side effects are irrevisible. I have many questions about this if anyone knows anything about it .

    Lisa

     
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    Old 11-14-2003, 06:37 PM   #2
    Slwm
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    Quote:
    Originally Posted by LisaMarieAndolina1
    Hello-
    I am an 18 yr. old female - I recently signed up for this message board. I have yet to see anyone talk about Hashimoto's Encephalopathy . . . it is an autoimmune disease and it is very misdiagnosed.(Hashimoto's Encephalopathy (H.E.) - 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.)
    Some symptoms are :
    Confusion
    Disorientation
    Psychosis
    Hallucinations
    Coma
    Tremors
    Convulsions
    Cognitive Difficulties
    Concentration Problems
    Attention Span Problems
    Difficulty Retaining Information
    Short Term Memory Problems
    Seizure Activity
    Myoclonus - Rapid, Involuntary, Uncontrollable Muscle Jerks or Spasms
    Dementia
    Fatigue
    Coordination Difficulties
    Headaches
    Episodes of Stroke
    Episodes of Stroke-Like Deterioration
    Right Sided Hemiparesis - Right Sided Partial Paralysis
    Left Sided Hemiparesis - Left Sided Partial Paralysis
    Aphasia - Speech Difficulties
    Articulation Difficulties
    Word Finding Difficulties
    Fine Motor Movement Problems - Coordination of Arms, Hands, Fingers."

    I was diagnosed with this disease about a month ago after undergoing a loooong list of testing to rule out other types of diseases such as M.S.

    This disease is so misdiagnosed because the symptoms can easily be blamed on other things. When i first started going to the doctors - i went for bad headaches. . .my doctor couldn't explain it so he blamed it on stress . . . ( i'm 18 - my stress is what out-fit i'm going to wear hahah ) anyways- a few monthes later the headaches were accompanied by tunneled vision and loss of all vision from anywhere form a 1/2 hour to 3 hrs. - then tremors. The doctors told me that the tremors were probably shakes from not eating . . .and the vision was because of the headaches. I then went to a nurologist after having an MRI done- his sec. was my cuzin and she got the report to us before he actually explained it. It came up abnormal with spoting. He never told me anything about it. He was in the room with me for about 2 min. told me i was pretty- kissed my hand and said i was fine.Now knowing that the MRI was infact abnormal my mother and i went to another doctor. He was amazing- he told me as much as he knew about what was going on- he would spen hours explaining - then the last blood test showed that i had antibodies in my blood streem. More that can be recorded on the chart. I went to double check if it wasn't a lab mistake- it wasn't.

    The problem with this is that so few doctors know what this disease is that they don't screen for it. and the symptoms are so common that you could spend a long time being treated for all the wrong things. This disease does not have a cure from what i am told - and if not treated early the side effects are irrevisible. I have many questions about this if anyone knows anything about it .

    Lisa
    So much of this sounds like Pernicious Anemia/Subacute Combined degeneration.

     
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