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howardjames
@howardjames

Posts: 39
Joined: May 06, 2016

Cerebellum Brain Atrophy

Posted by @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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REPLY

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

@colleenyoung

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

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No, he does not. We can’t find anyone else who has this

I found an older discussion on Connect https://connect.mayoclinic.org/discussion/idiopathic-brain-pain/ where members @menville and @lindal talked about living with cerebellar degeneration.

@howardjames, I thank you for starting this conversation to help attract others who may be facing the same condition. Do you know the underlying cause of his condition?

@colleenyoung

I found an older discussion on Connect https://connect.mayoclinic.org/discussion/idiopathic-brain-pain/ where members @menville and @lindal talked about living with cerebellar degeneration.

@howardjames, I thank you for starting this conversation to help attract others who may be facing the same condition. Do you know the underlying cause of his condition?

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No underlying cause. Eliminated any hereditary causes.

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?

Frustrating that this thread has not yet attracted others to the community who have cerebral atrophy. Have you been seen at Mayo Clinic?

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.

@howardjames, there are some links for NIH Patient Recruitment for Cerebral Atrophy Clinical Trials on this site – http://www.ninds.nih.gov/disorders/cerebral_atrophy/cerebral_atrophy.htm. I don’t know if it’s an option but hopefully there might be something close to where you live. Don’t give up hope…

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?

I’m so sorry that you are not getting the answers you so desperately want @howardjames. Did you go to Mayo recently rather than waiting until August? Did you see the NIH Cerebral Atrophy Clinical Trials links that @johnbishop shared with you?

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.

@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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We have been trying to connect with anyone who also has a diagnosis of cerebellum brain atrophy. How long have you had diagnosis and what was prognosis? Howard got diagnosis from Mayo Clinic in Rochester, Minn. in January of 2015. At that time there was a time line of 3 to 4 years to live. Any information would be appreciated.
Howard and Noreen

Was dx in October 2015 mild to mod atrophic changes in medial temporal lobe on right . Also mild cerebral atrophy….. I am nurse and was able to sit down and engage with my neurologist of my MRI Changes from MRI 3/14 2015 and one done on 10/2015. A pet scan ordered showed no early onset dementia or Alzheimer’s but no suggestions of why I have the atrophy. I also have an extensive family history autoimmune disease in immediate family which include MS, RA AS, psoriatic Arthritis and Lupus
I had received Dx of HLAB-27 and Lupus after labs by my family doctor. I had asked to be tested because 2 of my children were HLAB-27 +. And father and Paternal grandmother had Lupus. When I followed up with a Rheumatologist he said tests were inconclusive. The only other hx Is I had asthma as a child and in 2013 had had 5 hospitalizations for pneumonia ….I had a lung biopsy which differential dx was BOOP …… I was treated high dose steroids for 4 months …..I have some fibrosis……and take COZpd medication …… Maybe steroids caused changes in my brain? Maybe auto immune related ….. Back to neurologist in 3 weeks Reumatologist next week….. It affects my life in that I repeat things sometimes 3/4 times a day …. Hard to remember what i did yesterday or if I talked to someone ….. I have anxiety and I am unorganized and get overwhelmed easily ….. I used to be the best at multitasking . As a single mama of 4 for 16 yrs, I had practice.
Not sure if anything I just said helps….. I will report anything new I hear but as of now …… I too am still seeking answers.
Please keep updated and any new info I hear while I am researching, I will be sure to let you know.
I also will be praying for answers . God Bless you and give you favor and discernment.
Sincerely, Denise

@howardjames I have been diagnosed with Multiple System Atrophy which is a degenerative fatal disease with a prognosis of 5 – 9 years. It involves cerebral atrophy. which in turn is due to a protein alpha-syn which has altered its normal state and now formed deposits of non-soluble aggregates which destroy the neurons.Sounds similar to your diagnosis. No cure as yet. Very difficult to come to terms with.
pec2884

@pec2884

@howardjames I have been diagnosed with Multiple System Atrophy which is a degenerative fatal disease with a prognosis of 5 – 9 years. It involves cerebral atrophy. which in turn is due to a protein alpha-syn which has altered its normal state and now formed deposits of non-soluble aggregates which destroy the neurons.Sounds similar to your diagnosis. No cure as yet. Very difficult to come to terms with.
pec2884

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This is the first reply to my post. When my husband was seen at Mayo Clinic in Jan.of 2015 they gave him 3 to 4 years to live. They did not say what the cause was. He is now walking with a cane and in the evening with a walker if he is tired. He is progressing. He saw a movement specialist at Mayo Clinic. He said they were doing stem cell research. We will contact him in Aug. to see if there is anything different going on. I’m so sorry for you. My husband is 77 and at least has had a full life. It is hard on him as he was very active. We don’t know whether to go back to Mayo Clinic or not. We will let our local doctor contact them.
God’s blessings on you.

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