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.

@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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Hi i have cerebal atrohy and smal vessel ischeamia disease with progression and some white matter i have just been left to get on with also struggling to walk slow walking shuffling muscle aches whitch slows me down further cognitive problems thinking p dropping things no energy please could you tell me if you think its cfs ms or parkinsons nobodys ever told me the reason why ive got the brain disease ordone more tests and a neorologist i saw one time said its not neurolical i dont have neurolical problems even a private neurologist said the same but everything i read says otherwise

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Hi,@07851930740,
Were you asking if Cerebellar Ataxia and Cerebellar Atrophy are the same thing? I actually had the same question! Does anyone have that answer?
In what country are you being seen? Actually, only a doctor that specializes in Cerebellar Atrophy and causes, can answer your questions. It is unfortunate, but some people never find a cause or a disease that is responsible for their atrophy. My suggestion would be, do not give up! See as many specialists as you can until you get a satisfactory answer! If you do not have insurance, many clinics have generous benefactors who would pay the costs of your tests and doctors fees! (Like Mayo Clinic in Rochester, MN) You simply ask for the form to fill out. You can ask any clinic or neurological center if they have similar programs. Another option would be to find a clinical study near you. Some studies even pay the patients for participating. You could potentially get paid as well as diagnosed.
If you need help finding a clinic or a study, I am guessing the good people at Mayo would be of great assistance plus, there are many websites with directories. Best of luck to you!

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@colleenyoung

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

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One might consider where you live and work? City or in rural area? Any chance you were a farmer? Do we really know what certain chemicals do to some people? Exposure is everywhere. Rural might be a fair amount different than in the city. Just a thought.

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@howardjames

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 my grand daughter is 2 years old and was just recently diagnosed shee is now unable to walk and her speech is becoming impaired. I am looking for any kind of recommendations on questions for the drs tomorrow at her follow up apt i can get

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@howardjames

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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Welcome to Connect, @chiefsfan75
I'd like to introduce you to @lisapraska, whose son was also diagnosed with Cerebral Brain Atrophy and ultimately with White-Sutton syndrome. In addition to this discussion , you may be interested in reading more in these discussions on Connect to help prepare questions for your appointment tomorrow.
– White-Sutton syndrome https://connect.mayoclinic.org/discussion/white-sutton-syndrome/
– Cerebral Brain Atrophy https://connect.mayoclinic.org/discussion/cerebral-brain-atrophy-yet/

Chiefsfan, will you be accompanying your granddaughter to the appointment as a second set of ears for her parents?

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Hi. My friend’s son, Kevin – age 42, is going through this now. He’s been to All the nyc hospitals. They now recommend the Mayo Clinic to determine why his cerebellum is shrinking. He’s in dire shape and it’s been hell on everyone that cares about Kevin. I’m not sure if you’re still on here. It’s taken so long to get to this point. He’s been through so many tests and doesn’t want to go to Mayo …but he’s also not thinking properly. It’s a bad situation. I’m sorry you’re going through this.

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@karendam

Hi. My friend’s son, Kevin – age 42, is going through this now. He’s been to All the nyc hospitals. They now recommend the Mayo Clinic to determine why his cerebellum is shrinking. He’s in dire shape and it’s been hell on everyone that cares about Kevin. I’m not sure if you’re still on here. It’s taken so long to get to this point. He’s been through so many tests and doesn’t want to go to Mayo …but he’s also not thinking properly. It’s a bad situation. I’m sorry you’re going through this.

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Hello @karendam and welcome to Mayo Connect.

I am so sorry to hear about Kevin's difficulties with the shrinkage of his cerebellum. It is understandable that you are all concerned about him. He is fortunate to have so many caring people in his life!

I hope that he is able to allow others to help him with a decision to go to Mayo and get a second opinion.

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Just read today that some med that is available deals with cerebellum shrinkage. Mayo should know.

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@karendam

Hi. My friend’s son, Kevin – age 42, is going through this now. He’s been to All the nyc hospitals. They now recommend the Mayo Clinic to determine why his cerebellum is shrinking. He’s in dire shape and it’s been hell on everyone that cares about Kevin. I’m not sure if you’re still on here. It’s taken so long to get to this point. He’s been through so many tests and doesn’t want to go to Mayo …but he’s also not thinking properly. It’s a bad situation. I’m sorry you’re going through this.

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@karendam Mine is not shrinking, but filling up with dead protein Fibrils. I have hereditary Gelsolin Amyloidosis. Look my story with tests, timeline, etc.: https://bit.Ly/1w7j4j8 under Amyloidosis. The safest file is a PDF file, but otf is also there.

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@colleenyoung

Welcome to Connect, @chiefsfan75
I'd like to introduce you to @lisapraska, whose son was also diagnosed with Cerebral Brain Atrophy and ultimately with White-Sutton syndrome. In addition to this discussion , you may be interested in reading more in these discussions on Connect to help prepare questions for your appointment tomorrow.
– White-Sutton syndrome https://connect.mayoclinic.org/discussion/white-sutton-syndrome/
– Cerebral Brain Atrophy https://connect.mayoclinic.org/discussion/cerebral-brain-atrophy-yet/

Chiefsfan, will you be accompanying your granddaughter to the appointment as a second set of ears for her parents?

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My granddaughter just recently got out of the hospital again they gave her 5 days of ivig treatment with a steroid iv boost. She goes back October 2 to see if it will help slow down progression and help the ataxia at all

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@colleenyoung

Welcome to Connect, @chiefsfan75
I'd like to introduce you to @lisapraska, whose son was also diagnosed with Cerebral Brain Atrophy and ultimately with White-Sutton syndrome. In addition to this discussion , you may be interested in reading more in these discussions on Connect to help prepare questions for your appointment tomorrow.
– White-Sutton syndrome https://connect.mayoclinic.org/discussion/white-sutton-syndrome/
– Cerebral Brain Atrophy https://connect.mayoclinic.org/discussion/cerebral-brain-atrophy-yet/

Chiefsfan, will you be accompanying your granddaughter to the appointment as a second set of ears for her parents?

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My son just turned 30 and was diagnosed with Cerebral brain atrophy. We see a neurologist tomorrow to explain this. I am terrified and dont know what to expect

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