1. < Stroke & Cerebrovascular Diseases

Cerebral Brain Atrophy: Anyone else out there?

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.

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lisapraska | @lisapraska | Jul 12, 2017
In reply to @howardjames "Dear Colleen, Has there been any progress in finding a reason for cerebral brain atrophy. Howard..." + (show)
@howardjames

Dear Colleen,
Has there been any progress in finding a reason for cerebral brain atrophy. Howard James was their in Jan. of 2015 and was seen by Dr. Matsomoto who gave him about 4 years to live. I have only connected with Liz in South Africa who has been diagnosed with this. Have there been any headway made for a reason for this or any type of a cure or an arrest of progression. He is now walking with a walker but now is beginning to fall even with walker. We are in our home in Homer, Alaska and will be here on a permanent basis.
Noreen ( wife of Howard James)

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Hi Noreen , my name is Lisa, my son who is 5 yrs old and was diagnosed with the same thing just a few months ago, I am trying to talk to someone who knows more about Cerebellar Atrophy, I am just wondering if you could help inform me. Thank you.

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10 replies
howardjames | @howardjames | Jul 13, 2017
In reply to @lisapraska "Hi Noreen , my name is Lisa, my son who is 5 yrs old and was..." + (show)
@lisapraska

Hi Noreen , my name is Lisa, my son who is 5 yrs old and was diagnosed with the same thing just a few months ago, I am trying to talk to someone who knows more about Cerebellar Atrophy, I am just wondering if you could help inform me. Thank you.

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Dear Lisa,
I'm so sorry about your son!!! Who diagnosed him and did they do a brain MRI? My husband was diagnosed at Mayo Clinic after a referral from his local physician. He was only given 3 to 4 years to live. He was walking then, but progressed from that to a cane and now uses a wheeled cart to get around. He also has trouble talking which the Mayo doctor said he would. Doctor said he would probably die of pneumonia as he would probably aspirate to a lung when swallowing. Noreen

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lisapraska | @lisapraska | Jul 13, 2017
In reply to @lisapraska "Hi Noreen , my name is Lisa, my son who is 5 yrs old and was..." + (show)
@lisapraska

Hi Noreen , my name is Lisa, my son who is 5 yrs old and was diagnosed with the same thing just a few months ago, I am trying to talk to someone who knows more about Cerebellar Atrophy, I am just wondering if you could help inform me. Thank you.

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Dr. Bodensteiner, diagnised him. He says his brain is normal for a 65 year old but not for a 5 year old. My son had his MRI done 1 year ago and we have to wait till spring or summer next year for another, he says we have a base but need another to compare the 2 MRI's. He told me not to search the internet but of course I have, just no solid definition of what to expect until we can get that 2nd MRI done.My son was just diagnosed a few months ago.

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howardjames | @howardjames | Jul 15, 2017
In reply to @lisapraska "Hi Noreen , my name is Lisa, my son who is 5 yrs old and was..." + (show)
@lisapraska

Hi Noreen , my name is Lisa, my son who is 5 yrs old and was diagnosed with the same thing just a few months ago, I am trying to talk to someone who knows more about Cerebellar Atrophy, I am just wondering if you could help inform me. Thank you.

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Dear Lisa, Please keep me informed as to the second MRI!!! Is the doctor who diagnosed your son at the Mayo Clinic?

REPLY
lisapraska | @lisapraska | Jul 17, 2017
In reply to @lisapraska "Hi Noreen , my name is Lisa, my son who is 5 yrs old and was..." + (show)
@lisapraska

Hi Noreen , my name is Lisa, my son who is 5 yrs old and was diagnosed with the same thing just a few months ago, I am trying to talk to someone who knows more about Cerebellar Atrophy, I am just wondering if you could help inform me. Thank you.

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Yes and he just retired, he was pediatric neurology, my son has now been place with Dr. Youseff

REPLY
lisapraska | @lisapraska | Jul 20, 2017
In reply to @howardjames "Dear Colleen, Has there been any progress in finding a reason for cerebral brain atrophy. Howard..." + (show)
@howardjames

Dear Colleen,
Has there been any progress in finding a reason for cerebral brain atrophy. Howard James was their in Jan. of 2015 and was seen by Dr. Matsomoto who gave him about 4 years to live. I have only connected with Liz in South Africa who has been diagnosed with this. Have there been any headway made for a reason for this or any type of a cure or an arrest of progression. He is now walking with a walker but now is beginning to fall even with walker. We are in our home in Homer, Alaska and will be here on a permanent basis.
Noreen ( wife of Howard James)

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Noreen, did your husbsnd ever take dilantin for seizures?

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1 reply
howardjames | @howardjames | Jul 27, 2017
In reply to @lisapraska "Noreen, did your husbsnd ever take dilantin for seizures?" + (show)
@lisapraska

Noreen, did your husbsnd ever take dilantin for seizures?

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Has never had any seizures. Doctor said he probably would not. But I always hesitate to leave him alone. I always make him have his phone in his pocket. Noreen

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 28, 2017
In reply to @lisapraska "Hi Noreen , my name is Lisa, my son who is 5 yrs old and was..." + (show)
@lisapraska

Hi Noreen , my name is Lisa, my son who is 5 yrs old and was diagnosed with the same thing just a few months ago, I am trying to talk to someone who knows more about Cerebellar Atrophy, I am just wondering if you could help inform me. Thank you.

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Hello Lisa, @lisapraska

I am so sorry to hear of your son's diagnosis! If you care to share more - what symptoms was your son experiencing that led to this diagnosis?

Teresa

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lisapraska | @lisapraska | Jul 28, 2017
In reply to @lisapraska "Hi Noreen , my name is Lisa, my son who is 5 yrs old and was..." + (show)
@lisapraska

Hi Noreen , my name is Lisa, my son who is 5 yrs old and was diagnosed with the same thing just a few months ago, I am trying to talk to someone who knows more about Cerebellar Atrophy, I am just wondering if you could help inform me. Thank you.

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Developmental delays in all areas, hypotonia, unstable walking, speech impairments, not meeting milestones, 5 yrs old but memtally about 2 1/2to 3 yrs old.

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lisapraska | @lisapraska | Jul 28, 2017
In reply to @lisapraska "Hi Noreen , my name is Lisa, my son who is 5 yrs old and was..." + (show)
@lisapraska

Hi Noreen , my name is Lisa, my son who is 5 yrs old and was diagnosed with the same thing just a few months ago, I am trying to talk to someone who knows more about Cerebellar Atrophy, I am just wondering if you could help inform me. Thank you.

Jump to this post

Also MRI findings

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