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.

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

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@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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@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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@howardjames I am sorry to hear of your husband’s rare diagnosis. Rare disorders are difficult to face and deal with. I hope that you are able to obtain the information and knowledge about this disorder and find some others who are also walking the path that you are. Best wishes and prayers go with you!

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@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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I am so sorry to hear of your rare diagnosis.  Which I could give you a hug.

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@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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Thank you so very much for your empathy!!!

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@hopeful33250

@howardjames I am sorry to hear of your husband’s rare diagnosis. Rare disorders are difficult to face and deal with. I hope that you are able to obtain the information and knowledge about this disorder and find some others who are also walking the path that you are. Best wishes and prayers go with you!

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Thank you for your concern and prayers. They are very much appreciated. I hope that someone that has same diagnosis will see the post and share information.

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@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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So sorry about your diagnosis. Wondering if you were diagnosed at Mayo Clinic. Also is the cerebral atrophy affecting your balance? Howard is losing his balance and is walking with a cane. Sometimes has to use the walker (especially in evening). He will eventually be in a wheelchair and Mayo doctor says he will begin to have trouble swallowing and could aspirate into a lung. Just wondering if you are younger than he. He is 77 and is grateful this did not occur when he was younger and holding a job. Please keep us posted. This is a wonderful site!

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@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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@howardjames. No I live in South Africa and would love contact with fellow MSA suffers. Yes my balance is affected by the Cerebral Atrophy. I am still in the early stages and only walk with a stick when taking the dogs for a walk. I was diagnosed in March this year with symptoms appearing in 2013. I am 73 yrs old and still athletic, I have been warned about trouble with swallowing, speech and loss of involuntary muscle control. I am due for another visit to my neurologist tomorrow and have many questions for him.

Thank you for your reply. Will keep in touch

pec2884

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It has been awhile since I posted to this site. My husband was diagnosed with cerebellum brain atrophy in January. of 2015 at Mayo Clinic in Rochester, Minnesota. The movement specialist there gave him 3 to 4 years to live. He is now walking with a cane but will soon progress to a walker and then wheelchair and would probably die of pneumonia. I have not heard from anyone with this diagnosis. He is clear of mind but his speech is getting very hard to understand. This is very hard for him as he was very physically fit and healthy. Is there any one who has the same diagnosis or is this very rare? Should he go somewhere else for diagnosis or is there anything to slow this down? Thank you for any responses.

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Welcome back @howardjames. I moved your latest message to the forum/discussion that your originally started about cerebellum brain atrophy. That way everyone participating in this forum will receive an email notice that a new message was posted, and the forum moves to the top of the list of discussions in the Brain & Nervous System group. This will attract addition members to join the conversation.

Dmkmom04 and Liz who have posted here, also have conditions that include cerebellum atrophy. You are not alone in seeking answers, although it must feel that way. I wish I had an answer of where to go or how to slow it down.

@pec2884 and @dmkmom04, we look forward to hearing from you again. Any updates?

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@howardjames

It has been awhile since I posted to this site. My husband was diagnosed with cerebellum brain atrophy in January. of 2015 at Mayo Clinic in Rochester, Minnesota. The movement specialist there gave him 3 to 4 years to live. He is now walking with a cane but will soon progress to a walker and then wheelchair and would probably die of pneumonia. I have not heard from anyone with this diagnosis. He is clear of mind but his speech is getting very hard to understand. This is very hard for him as he was very physically fit and healthy. Is there any one who has the same diagnosis or is this very rare? Should he go somewhere else for diagnosis or is there anything to slow this down? Thank you for any responses.

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Glad you are back. I would like to keep in touch. The news is such a shock in one’s life. Almost incomprehensible to outsiders. I am at a far earlier stage and fighting back with Pilates and Bio kinetics.

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