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Thread: Could this be long standing CJD?

  1. #1

    Unhappy Could this be long standing CJD?

    Dear Forum,

    18 years ago (in 1997) I had transsphenoidal surgery to remove a pituitary tumor at UCLA. 14 years ago (Sep. 2001) I started to experience light sensitivity and mild dizziness. A few months later (Dec 2001)I had memory problems, noise sensitivity and myoclonus. A spinal tap was negative for the 14-3-3 protein and I was seen by Dr. Bruce Miller at UCSF for a consult in April 2002. Dr. Miller didn't really think that I had CJD, but couldn't say for sure since I'd only had symptoms for 7 months at the time of the appointment.

    My symptoms continued throughout the following years, but the memory and myoclonus improved somewhat after I added lots of anti-oxidants (and natural hormones) to my daily supplements.

    During the past few years I've continued to experience daily mild to moderate dizziness, light sensitivity and mild skin sensitivity.

    Just recently in Sep. 2015 (during the past month or so) I've started to experience pretty severe and constant noise sensitivity to noises that never used to bug me (like phones ringing, people talking loudly or music playing). The noise hurts my ears and makes me feel really anxious. I've also been experiencing myoclonic muscle jerks while trying to fall asleep. This particular symptom (noise sensitivity) is really upsetting and I'm experiencing really extreme anxiety that I've never experienced before. I'm also experiencing some skin sensitivity where my skin feels as if I have sunburn (which I don't).

    Can CJD have a duration of 14 years from when symptoms start? I'm so anxious and scared that I can't eat, sleep or think clearly.

    Would appreciate any input.

  2. #2
    Distinguished Community Member
    Join Date
    Oct 2006
    Bacliff, Texas


    cjd tse prion can have long incubation period 30+ years.

    Thursday, August 13, 2015

    Iatrogenic CJD due to pituitary-derived growth hormone with genetically determined incubation times of up to 40 years


    i would suggest you see another neurologist at a large university medical institution...just a suggestion.

    sorry i could not have been more help...good luck!

    kindest regards, terry

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