1. < Stroke & Cerebrovascular Diseases

Cerebellum atrophy with no known cause

Posted by nhawse @nhawse, May 22, 2019

My husband was diagnosed with cerebellum atrophy with no known cause in February. We still don’t know the cause. The doctors are leaning towards genetic. We still do not know the prognosis or how fast it will go. He is 48. Use to be a police officer. He is taking it hard. We have only been married for 2.5 months. Some days he does fine or days he can hardly walk. We just don’t know what to do if anything.

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

SusanEllen66 | @SusanEllen66 | Dec 3, 2023
In reply to @annewoodmayo "Hey there, Sue Ellen, Your situation sounds crummy- my sympathy! Mine might be a bit similar..." + (show)
@annewoodmayo

Hey there, Sue Ellen,

Your situation sounds crummy- my sympathy! Mine might be a bit similar to yours.

I have an autoimmune disease/s, too.
I get tingling in my tongue, lips and face (intermittent, bilateral paresthesia?).
Dentist, primary care doctor, 2 Ear-nose-throat doctors and neurologist with 2 brain MRIs -- conclusion is that there is inflammation somewhere inside my skull that is causing it. My rheumatologist thinks they are probably correct. So far, for me it's just an annoyance-- depressing but just annoying. I wonder now if all the doctors avoided saying "my brain is inflamed" so I wouldn't get upset.

I'm sorry that yours has thrown off your gait, etc. (Must really stink for you. I'm sorry I can't think of a better way to say that.) I can see why you might feel apathetic now. I find this Mayo site helpful. It helps me try to think if I can help other people here AND the "How about a laugh" section and the "Inspiring Quotes" section both cheer me up.

Do you talk with a therapist? I do and she is really helpful. Dealing with chronic illness is a burden and she has helped me a lot. Maybe you could give counseling a try?

Good luck to us 🙂

Jump to this post

@annewoodmayo
I am in a rush now but wanted to respond.
Your situation might be occipital neuralgia. It’s inflammation of the nerves under your scalp. I’m running out to church now…

REPLY
SusanEllen66 | @SusanEllen66 | Dec 3, 2023
In reply to @mjcbsn "TBI Traumatic Brain Injury from a car accident that resulted in a brain bleed ." + (show)
@mjcbsn

TBI Traumatic Brain Injury from a car accident that resulted in a brain bleed .

Jump to this post

@mjcbsn oh my that is awful!
Cars were not built the same back then for sure. In 1969 I was T-boned and hit my face on that hard steering wheel. It dislocated my jaw joints.

REPLY
SusanEllen66 | @SusanEllen66 | Dec 3, 2023
In reply to @annewoodmayo "Hey there, Sue Ellen, Your situation sounds crummy- my sympathy! Mine might be a bit similar..." + (show)
@annewoodmayo

Hey there, Sue Ellen,

Your situation sounds crummy- my sympathy! Mine might be a bit similar to yours.

I have an autoimmune disease/s, too.
I get tingling in my tongue, lips and face (intermittent, bilateral paresthesia?).
Dentist, primary care doctor, 2 Ear-nose-throat doctors and neurologist with 2 brain MRIs -- conclusion is that there is inflammation somewhere inside my skull that is causing it. My rheumatologist thinks they are probably correct. So far, for me it's just an annoyance-- depressing but just annoying. I wonder now if all the doctors avoided saying "my brain is inflamed" so I wouldn't get upset.

I'm sorry that yours has thrown off your gait, etc. (Must really stink for you. I'm sorry I can't think of a better way to say that.) I can see why you might feel apathetic now. I find this Mayo site helpful. It helps me try to think if I can help other people here AND the "How about a laugh" section and the "Inspiring Quotes" section both cheer me up.

Do you talk with a therapist? I do and she is really helpful. Dealing with chronic illness is a burden and she has helped me a lot. Maybe you could give counseling a try?

Good luck to us 🙂

Jump to this post

@annewoodmayo
Reply #2. I am back from church…

I have psychologist because I have mental health issues. So that’s a given.

The Autoimmune diseases I have, Polyarthritis Nodosa, Fibromyalgia, and Occipital Neuralgia are causing me all kinds of problems. I see a rheumatologist, and a neurologist.

Hopefully, the cognitive test results from this week will give me a clearer picture of what I can expect for my future.

REPLY
Mentor
Helen, Volunteer Mentor | @naturegirl5 | Dec 3, 2023
In reply to @SusanEllen66 "Two years ago I was diagnosed with Mild Cognitive Impairment. The MRI showed moderate atrophy of..." + (show)
@SusanEllen66

Two years ago I was diagnosed with Mild Cognitive Impairment. The MRI showed moderate atrophy of the Cerebellum. My balance (gait) is bad. I now use a cane or walker. I’ve become apathetic about most things.
Today I started a second round of brain testing. I had an MRI & MRA this afternoon.
The possibility that I have vascular dementia is high because I have several autoimmune diseases which inflame my arteries.

Anyone else have atrophy in the brain because of inflammation from an autoimmune disease?

Jump to this post

@SusanEllen66 Have you talked yet with your psychologist about your cognitive tests and your worries about vascular dementia?

The functions of the cerebellum include coordinating gait and balance. It is not directly involved in cognitive function such as memory but it is involved in coordinating the muscles having to do with speech articulation.

You shared that you see a neurologist. Have you talked with the neurologist about your results?

REPLY
1 reply
SusanEllen66 | @SusanEllen66 | Dec 4, 2023
In reply to @naturegirl5 "@SusanEllen66 Have you talked yet with your psychologist about your cognitive tests and your worries about..." + (show)
@naturegirl5

@SusanEllen66 Have you talked yet with your psychologist about your cognitive tests and your worries about vascular dementia?

The functions of the cerebellum include coordinating gait and balance. It is not directly involved in cognitive function such as memory but it is involved in coordinating the muscles having to do with speech articulation.

You shared that you see a neurologist. Have you talked with the neurologist about your results?

Jump to this post

@naturegirl5
Yes, the neurologist is aware that I see a psychologist. I share information amongst all my doctors.

I’m currently in the middle of multiple MRIs, MRA, and cognitive testing including the dreaded psychological test. I’ll be done the end of the week. My follow up appointment with my neurologist isn’t until January.

I was diagnosed with Mild Cognitive Impairment more than 2 years ago. The balance issue is just another part of the equation. My eyesight has become worse, and my ophthalmologist said there is nothing he can do about that. I have double vision, and my neurologist said my eyes bounced when I was trying to follow his finger. Go figure…

I live alone. That is my choice but I know that will have to change.

REPLY
1 reply
Mentor
Helen, Volunteer Mentor | @naturegirl5 | Dec 4, 2023
In reply to @SusanEllen66 "@naturegirl5 Yes, the neurologist is aware that I see a psychologist. I share information amongst all..." + (show)
@SusanEllen66

@naturegirl5
Yes, the neurologist is aware that I see a psychologist. I share information amongst all my doctors.

I’m currently in the middle of multiple MRIs, MRA, and cognitive testing including the dreaded psychological test. I’ll be done the end of the week. My follow up appointment with my neurologist isn’t until January.

I was diagnosed with Mild Cognitive Impairment more than 2 years ago. The balance issue is just another part of the equation. My eyesight has become worse, and my ophthalmologist said there is nothing he can do about that. I have double vision, and my neurologist said my eyes bounced when I was trying to follow his finger. Go figure…

I live alone. That is my choice but I know that will have to change.

Jump to this post

@SusanEllen66 That is a lot of testing but hopefully you will get some answers. January isn’t all that far away. Only a few weeks. It takes some time for a psychologist to figure out results of psychological testing and interpret them so that information might come to you shortly before you see the neurologist.

Moving is so difficult to think about, isn’t it? When I was in my 20’s I could pack everything I owned into my little car and moving didn’t seem like such a big deal. Now that I’m in my 70’s it’s overwhelming. Do you have some ideas about what you would like your living situation to be?

REPLY
SusanEllen66 | @SusanEllen66 | Dec 4, 2023
In reply to @SusanEllen66 "Two years ago I was diagnosed with Mild Cognitive Impairment. The MRI showed moderate atrophy of..." + (show)
@SusanEllen66

Two years ago I was diagnosed with Mild Cognitive Impairment. The MRI showed moderate atrophy of the Cerebellum. My balance (gait) is bad. I now use a cane or walker. I’ve become apathetic about most things.
Today I started a second round of brain testing. I had an MRI & MRA this afternoon.
The possibility that I have vascular dementia is high because I have several autoimmune diseases which inflame my arteries.

Anyone else have atrophy in the brain because of inflammation from an autoimmune disease?

Jump to this post

@naturegirl5 last night I was able to see the test results of the MRI and MRA done on Thursday. The Imaging portal has them posted for me to see. Based on the reports my arteries feeding into the brain are normal!
Yeah!
Now the cognitive function tests are this week and another MRI tomorrow morning.

I’m 74 and understand what you’re saying about moving. Back in the ‘60s people would pack their belongings into a VW bug and take off!
I have no clue where I can go. I have 2 sons, one is an addict, and the other is just not a caretaker.
I live in Arizona in the very warm/ hot desert climate that I love. I have family in NY but the cold weather hurts my bones!
So, one day at a time.

REPLY
dd2312 | @dd2312 | Dec 4, 2023
In reply to @SusanEllen66 "Two years ago I was diagnosed with Mild Cognitive Impairment. The MRI showed moderate atrophy of..." + (show)
@SusanEllen66

Two years ago I was diagnosed with Mild Cognitive Impairment. The MRI showed moderate atrophy of the Cerebellum. My balance (gait) is bad. I now use a cane or walker. I’ve become apathetic about most things.
Today I started a second round of brain testing. I had an MRI & MRA this afternoon.
The possibility that I have vascular dementia is high because I have several autoimmune diseases which inflame my arteries.

Anyone else have atrophy in the brain because of inflammation from an autoimmune disease?

Jump to this post

I have cerebellar degeneration of unknown cause that is most evident on a PET scan. This was not demonstrated by a brain MRI scan. If the MRI doesn't answer the question, additional tests would be a PET scan and possibly a spinal tap to analyze the cerebrospinal fluid. That is helpful for identifying immune system problems affecting the brain. I have found the National Ataxia Foundation helpful in learning more about disorders affecting the cerebellum. Many of them have a genetic cause. The website is: https://www.ataxia.org.
Also, to Helen, there is a specific cognitive syndrome related to the cerebellum: Schmahmann's syndrome.

REPLY
2 replies
SusanEllen66 | @SusanEllen66 | Dec 4, 2023
In reply to @dd2312 "I have cerebellar degeneration of unknown cause that is most evident on a PET scan. This..." + (show)
@dd2312

I have cerebellar degeneration of unknown cause that is most evident on a PET scan. This was not demonstrated by a brain MRI scan. If the MRI doesn't answer the question, additional tests would be a PET scan and possibly a spinal tap to analyze the cerebrospinal fluid. That is helpful for identifying immune system problems affecting the brain. I have found the National Ataxia Foundation helpful in learning more about disorders affecting the cerebellum. Many of them have a genetic cause. The website is: https://www.ataxia.org.
Also, to Helen, there is a specific cognitive syndrome related to the cerebellum: Schmahmann's syndrome.

Jump to this post

@dd2312 thanks for the information! I will definitely ask my neurologist about Ataxia. I watched some YouTube videos and it appears to be a possibility.
Thanks

REPLY
Mentor
Helen, Volunteer Mentor | @naturegirl5 | Dec 5, 2023
In reply to @dd2312 "I have cerebellar degeneration of unknown cause that is most evident on a PET scan. This..." + (show)
@dd2312

I have cerebellar degeneration of unknown cause that is most evident on a PET scan. This was not demonstrated by a brain MRI scan. If the MRI doesn't answer the question, additional tests would be a PET scan and possibly a spinal tap to analyze the cerebrospinal fluid. That is helpful for identifying immune system problems affecting the brain. I have found the National Ataxia Foundation helpful in learning more about disorders affecting the cerebellum. Many of them have a genetic cause. The website is: https://www.ataxia.org.
Also, to Helen, there is a specific cognitive syndrome related to the cerebellum: Schmahmann's syndrome.

Jump to this post

@dd2312 Thank you for the reference to Schmahmann Syndrome. Here is a peer-reviewed article found for anyone interested in reading more about this.

The Cerebellar Cognitive Affective Schmahmann Syndrome:

— https://link.springer.com/article/10.1007/s12311-019-01068-8

REPLY
View MoreView Less
Please sign in or register to post a reply.