Discussions By Condition: Medical Stories

Cerebellar agenesis/cerebral palsy

Posted In: Medical Stories 3 Replies
  • Posted By: clintwirth
  • February 9, 2011
  • 03:44 AM

I have Cerebellar agenesis. I've known for 5 years. The doctors told my mother when I was born (1966) that I should be "put away" because I woyld never walk or talk or amount to anything. I am now 44, I have a degree in psychology, I took some classes in networking, and I work for the Department of Defense in supply I not only drive; I drive well, but it took me at least 10 years longer then "normal" to get where I am When I was born I was mis-diagnosed with cerebral palsy; doctors didn't know Cerebellar agenesis existed, so I didn't have an MRI done until 5 years ago. The doctors originally told my parents that until an autopsy was done, they had no way no knowing what was wrong. But that was in 1966. In 2005 I had an MRI done and that's when they found the agenesis.

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  • I have Cerebellar agenesis. I've known for 5 years. The doctors told my mother when I was born (1966) that I should be "put away" because I woyld never walk or talk or amount to anything. I am now 44, I have a degree in psychology, I took some classes in networking, and I work for the Department of Defense in supply I not only drive; I drive well, but it took me at least 10 years longer then "normal" to get where I am When I was born I was mis-diagnosed with cerebral palsy; doctors didn't know Cerebellar agenesis existed and MRIs didn't exist, so I didn't have an MRI done until 5 years ago. The doctors originally told my parents that until an autopsy was done, they had no way no knowing what was wrong. But that was in 1966. In 2005 I had an MRI done and that's when they found the agenesis.I would like to amend the above post as follows: This condition, from what I understand, is very rare with only 3% of the population being diagnosed. I would like to hear from anyone who has this condition, or knows someone who has this condition. I am willing to impart any knowledge about myself and what it’s like dealing with this condition that I can. Also, I have, on DVD, the MRI I had in 2005 and one I had done in 2010.
    clintwirth 1 Replies
    • February 21, 2011
    • 05:57 PM
    • 0
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  • Hello,My 20 month old twin daughter is also diagnosed with cerebellar agenesis. I would like to speak with you about your journey and challenges. FYI Dr. Jeremy Schmahmann at Massachusetts General Hospital is top in his field and studying this very anomaly.Looking forward to hearing from you.RubyTuesday
    RubyTuesday 2 Replies Flag this Response
  • Hello,I am very interested in discussing your personal journey with you as my 20 month old twin also has been diagnosed with cerebellar agenesis. Please contact me at rubyt300@gmail.comThanks.Also, Dr. Jeremy Schmahmann Click here: http://www.massgeneral.org/neurology/researcher_profiles/schmahmann_jeremy.aspxis studying this as well.Thanks!
    RubyTuesday 2 Replies Flag this Response
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