Cerebellum Brain Atrophy

Posted by howardjames @howardjames, Jun 5, 2016

My husband has been diagnosed with cerebral atrophy. Is there anyone with similar diagnosis? In January of 1915 he was given 3 to 4 years to live.

Welcome to Connect @howardjames. Does your husband have Alzheimer’s disease?

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@colleenyoung

Welcome to Connect @howardjames. Does your husband have Alzheimer’s disease?

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No, he does not. We can’t find anyone else who has this

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I found an older discussion on Connect https://connect.mayoclinic.org/discussion/idiopathic-brain-pain/ where members @menville and @lindal talked about living with cerebellar degeneration.

@howardjames, I thank you for starting this conversation to help attract others who may be facing the same condition. Do you know the underlying cause of his condition?

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@colleenyoung

I found an older discussion on Connect https://connect.mayoclinic.org/discussion/idiopathic-brain-pain/ where members @menville and @lindal talked about living with cerebellar degeneration.

@howardjames, I thank you for starting this conversation to help attract others who may be facing the same condition. Do you know the underlying cause of his condition?

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No underlying cause. Eliminated any hereditary causes.

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I still have not heard from anyone else having cerebral atrophy diagnosis. Does anyone out there have a similar problem. Should we go anywhere else beside Mayo Clinic?

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Frustrating that this thread has not yet attracted others to the community who have cerebral atrophy. Have you been seen at Mayo Clinic?

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Yes, they are the ones who diagnosed it as home Doctors just kept doing tests with no diagnosis. Doctor at Mayo just said they were doing stem cell research. We have not been back as we live in Michigan and it’s a long drive. We will check with Mayo in August to see if anything is new. I just can’t believe that no one else has this.

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@howardjames, there are some links for NIH Patient Recruitment for Cerebral Atrophy Clinical Trials on this site – http://www.ninds.nih.gov/disorders/cerebral_atrophy/cerebral_atrophy.htm. I don’t know if it’s an option but hopefully there might be something close to where you live. Don’t give up hope…

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I still have not heard from anyone who has a diagnosis of cerebellum atrophy. Does no one have this dianosis? We have been to Mayo Clinic in Rochester, Mn. who gave him 3 to 4 years to live. He does not have Parkinson’s disease although his ability to write has become illegible. His speech is becoming harder to understand. We have tried many sites but most are for Parkinson’s studies or Alzheimer’s. He has neither. His cerebellum is dying. Should we go somewhere else and where?

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I’m so sorry that you are not getting the answers you so desperately want @howardjames. Did you go to Mayo recently rather than waiting until August? Did you see the NIH Cerebral Atrophy Clinical Trials links that @johnbishop shared with you?

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Hi @dmkmom04. In another discussion about autoimmune diseases, you mentioned that you also had brain atrophy. I’m tagging you here in this discussion about cerebral atrophy so you can share your experience with @howardjames.

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@colleenyoung

Hi @dmkmom04. In another discussion about autoimmune diseases, you mentioned that you also had brain atrophy. I’m tagging you here in this discussion about cerebral atrophy so you can share your experience with @howardjames.

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We have been trying to connect with anyone who also has a diagnosis of cerebellum brain atrophy. How long have you had diagnosis and what was prognosis? Howard got diagnosis from Mayo Clinic in Rochester, Minn. in January of 2015. At that time there was a time line of 3 to 4 years to live. Any information would be appreciated.
Howard and Noreen

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