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howardjames
@howardjames

Posts: 39
Joined: May 06, 2016

Cerebral Brain Atrophy

Posted by @howardjames, Jul 12, 2017

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)

REPLY

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.

@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

@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.

@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?

@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

Noreen, did your husbsnd ever take dilantin for seizures?

@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

@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

@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.

@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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Also MRI findings

@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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@lisapraska How heart-breaking for you! Is there any type of physical therapy that can help with his walking, gait or speech?

Teresa

@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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He is getting occupational therapy, speech therapy, physical therapy, basically any type of therapy there is.

Hi. Based on a couple MRI’s, I have severe cerebellar atrophy related to an undetermined disease. My balance and coordination were less a year or so ago. I have been told and have read this condition is incurable and only the symptoms are treatable. I have tried everything I am aware of to slow the progression or make this go away. I am currently seeing a natural healing specialist and feel as this is helping, along with brain restore medication. I also have a speech impairment (dysarthria) and very vivid (I believe they are real at the time) dreams and have had hallucinations, along with wide gait and breathing problems (currently on oxygen). My prayers go to all involved in this terrible condition.

Welcome to Connect, @dkeg. We’re glad you found this discussion group. In addition to @howardjames (Noreen) who’s husband has Cerebral Atrophy and @lisapraska who’s young son is living with it, I’d like to introduce you to @pec2884 (Liz) who lives with cerebellar atrophy. You can read more conversations between Liz and Noreen here:

– Cerebellum Brain Atrophy https://connect.mayoclinic.org/discussion/cerebellum-atrophy/

DKeg, the dreams and hallucinations must be troubling. How do they affect you and how to you cope with that?

Just got a call today from geonomics dept., will hear results on large panel on November 6th, why such a long wait?

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