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.

Interested in more discussions like this? Go to the Stroke & Cerebrovascular Diseases Support Group.

oldkarl | @oldkarl | Jul 8, 2021
In reply to @larryh123 "Thanks for the info and willingness to share info on your conditions and giving potential info..." + (show)
@larryh123

Thanks for the info and willingness to share info on your conditions and giving potential info for @pettis
I will share a little. Both of my grandsons were born with hydrocephalus They were able to shunt both of them in their first week of life. One is 5 and is thriving. The other is 3 months and doing well.

I am intrigued by the gene you mentioned for the hydrocephalus. Is that an Autosomal recessive type of gene?

Peace
Larry H

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@larryh123 Hi, @Larryh Thanks for your query. As a quick answer, http://www.omim.org/entry/hydrocephalus should give you a lot of 'stuff' on the 500+ genes OMIM lists for involvement in hydrocephalus. Some are recessive, most are dominant. This source is free, and targeted toward professionals, but I am on it almost every day. Another great source is Jackson Lab's human phenotype O (I cannot right now remember the word for O) http://hpo.jax.org for hydrocephalus. Jackson is quite proud of their work in this, and rightfully so. These two will lead you toward legitimate info on almost any gene. More later. oldkarl

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2 replies
Larry | @larryh123 | Jul 8, 2021
In reply to @oldkarl "@larryh123 Hi, @Larryh Thanks for your query. As a quick answer, http://www.omim.org/entry/hydrocephalus should give you a..." + (show)
@oldkarl

@larryh123 Hi, @Larryh Thanks for your query. As a quick answer, http://www.omim.org/entry/hydrocephalus should give you a lot of 'stuff' on the 500+ genes OMIM lists for involvement in hydrocephalus. Some are recessive, most are dominant. This source is free, and targeted toward professionals, but I am on it almost every day. Another great source is Jackson Lab's human phenotype O (I cannot right now remember the word for O) http://hpo.jax.org for hydrocephalus. Jackson is quite proud of their work in this, and rightfully so. These two will lead you toward legitimate info on almost any gene. More later. oldkarl

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@oldkarl - Thanks for the great info.
I will be looking at to learn more about hydrocephalus. Since my grandsons were born with it, I have ben hungry for more information.
Your words "legitimate info"are so true. There issue much information to sift through and so much of it is "noise"

I know your posts will help others.

Peace
Larry H

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keithl56 | @keithl56 | Jul 8, 2021
In reply to @keithl56 "At this point I'm limiting my activity somewhat. Today's EKG showed some differences from the last..." + (show)
@keithl56

At this point I'm limiting my activity somewhat. Today's EKG showed some differences from the last but it could be that my blood pressure was so low and my heart was working harder. I'll feel better once I get the holter monitor results. Thanks for asking.

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Update - this morning my cardio called and they scheduled me to have an implantable loop inserted on Monday. I am pleased at how responsible my whole care team has been.

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pettis | @pettis | Jul 10, 2021
In reply to @larryh123 "Thanks for the info and willingness to share info on your conditions and giving potential info..." + (show)
@larryh123

Thanks for the info and willingness to share info on your conditions and giving potential info for @pettis
I will share a little. Both of my grandsons were born with hydrocephalus They were able to shunt both of them in their first week of life. One is 5 and is thriving. The other is 3 months and doing well.

I am intrigued by the gene you mentioned for the hydrocephalus. Is that an Autosomal recessive type of gene?

Peace
Larry H

Jump to this post

I do not have a gene for hydrocephalus. My genetic test results are normal.

REPLY
alexgoldman2 | @alexgoldman2 | Aug 12, 2021
In reply to @hopeful33250 "Hello @alexgoldman2 I would like to join Lisa, @lisalucier, in welcoming you to Mayo Connect. I..." + (show)
@hopeful33250

Hello @alexgoldman2

I would like to join Lisa, @lisalucier, in welcoming you to Mayo Connect. I am sorry to hear of your diagnosis of cerebellum atrophy.

I also would be interested in knowing what type of symptoms you had that your doctors considered this diagnosis and what type of tests were done to come to his conclusion? Have the results from the blood test at Mayo be sent to you doctor yet?

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Hello, I have undergone 2 MRI's and several blood tests, XRays, etc. No help! Alex

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1 reply
oldkarl | @oldkarl | Aug 13, 2021
In reply to @oldkarl "@larryh123 Hi, @Larryh Thanks for your query. As a quick answer, http://www.omim.org/entry/hydrocephalus should give you a..." + (show)
@oldkarl

@larryh123 Hi, @Larryh Thanks for your query. As a quick answer, http://www.omim.org/entry/hydrocephalus should give you a lot of 'stuff' on the 500+ genes OMIM lists for involvement in hydrocephalus. Some are recessive, most are dominant. This source is free, and targeted toward professionals, but I am on it almost every day. Another great source is Jackson Lab's human phenotype O (I cannot right now remember the word for O) http://hpo.jax.org for hydrocephalus. Jackson is quite proud of their work in this, and rightfully so. These two will lead you toward legitimate info on almost any gene. More later. oldkarl

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Just remembered the address: But to be certain, look up Jackson Labs on Google HPO is Human Phenotype Ontology. It is a great site for anyone. oldkarl

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 14, 2021
In reply to @alexgoldman2 "Hello, I have undergone 2 MRI's and several blood tests, XRays, etc. No help! Alex" + (show)
@alexgoldman2

Hello, I have undergone 2 MRI's and several blood tests, XRays, etc. No help! Alex

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Hi @alexgoldman2

When you say that the x-rays and blood test were no help what do you mean? That they were no help in achieving a diagnosis or the cause? How are you feeling?

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dkeg | @dkeg | Feb 15, 2022
In reply to @howardjames "I still have not heard from anyone who has a diagnosis of cerebellum atrophy. Does no..." + (show)
@howardjames

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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Hi. I had my first MRI of several in 2015 with identification of Cerebellar Atrophy. I also have dysarthria, restless legs, loss of balance, neurogenic bladder and more. I have seen numerous neurologists and the last neurologist identified inconsistencies in my MRI's. I'm not sure what is going on. Time will tell. Think positive. Talk with you later. Remember, think positive.

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nleejewell | @nleejewell | Feb 26, 2022
In reply to @howardjames "I still have not heard from anyone else having cerebral atrophy diagnosis. Does anyone out there..." + (show)
@howardjames

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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Yes, my husband was recently diagnosed and has had to bleeds in two months requesting hospitalization. He’d apparently had several small bleeds as well as 2 large ones earlier. He was on Eliquis because of AFib and both his neurologist and cardiologist agreed that he needed to stop and avoid all blood thinners to prevent a massive stroke. There is no cure for this rare, totally unpredictable disease. It’s progressive and degenerative. I see people chasing cures, the right doctor, drug, test, cause - it’s irrelevant. None of them is a cure. There are treatments for some types and symptoms, but no cures. I’m terribly sorry. Believe me, I understand completely. Accept it, begin each day as a new day - enjoy what you can as long as you have it. It’s the most anyone gets.

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valans | @valans | Dec 21, 2022

hello, new here. diagnosed when I was 15, I'm 37 now, so 22 years living with this. unknown reason, maybe genetics according to doctors (their go-to answer when they don't know the answer). friends says maybe its because of my habit of taking a bath after playing basketball, change of body temperature and stuff, which is possible I guess. its so hard and just so frustrating at first, especially the physical therapy, that was something. looked at it as a curse before, but now I'm not sure (more of a blessing)

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