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.

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Liz Horne | @pec2884 | Jan 1, 2017

Hi Noreen. I do get the user names mixed up. Glad to have them sorted now. I am struggling at the moment with dizziness, fatigue and balance. We are having a blisteringly hot summer at the moment with water restrictions and gardens oh so dry. My daughter lives in Regina, Saskatchewan and has such cold weather and snow i wish I was there.
I am excited to have traced another MSA sufferer in SA other than Sonja. Someone else to chat to.
Hope the hunting goes well and your trip to Alaska.Everyhing of the best for 2017
Liz/pec2884

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1 reply
howardjames | @howardjames | Jan 1, 2017
In reply to @pec2884 "Hi Noreen. I do get the user names mixed up. Glad to have them sorted now...." + (show)
@pec2884

Hi Noreen. I do get the user names mixed up. Glad to have them sorted now. I am struggling at the moment with dizziness, fatigue and balance. We are having a blisteringly hot summer at the moment with water restrictions and gardens oh so dry. My daughter lives in Regina, Saskatchewan and has such cold weather and snow i wish I was there.
I am excited to have traced another MSA sufferer in SA other than Sonja. Someone else to chat to.
Hope the hunting goes well and your trip to Alaska.Everyhing of the best for 2017
Liz/pec2884

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Dear Liz,
Just want to make sure that you are the one that lives in South Africa! Where were you diagnosed with the cerebellum brain atrophy? What a surprise to hear that you have a daughter in Regina, Sask. When we drive to through to Alaska we stop to visit two of my cousins who live in Swift Current, Saskatchewan and Kindersley, Saskatchewan. My Dad was from Saskatchewan and went to school in Regina because the local school only went through Grade 8.
My husband, Howard, is walking with a walker now. He uses his cane once in awhile. He never feels dizziness but will fall down as though the brain just won't let him stand up. Apparently the cerebellum brain atrophy is very rare. The doctor gives him about two years to live. Noreen

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tonyc55 | @tonyc55 | Jan 1, 2017
In reply to @dmkmom04 "Was dx in October 2015 mild to mod atrophic changes in medial temporal lobe on right..." + (show)
@dmkmom04

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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I have corticobasal syndrome, I was diagnosed in October 2015 and your illness sounds the same

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tonyc55 | @tonyc55 | Jan 1, 2017
In reply to @howardjames "Dear Colleen, This is concerning HowardJames and his diagnosis from Mayo Clinic in Rochester,Mn and his..." + (show)
@howardjames

Dear Colleen,
This is concerning HowardJames and his diagnosis from Mayo Clinic in Rochester,Mn and his diagnosis of Cerebellum Brian Atrophy with only 3 to 4 years to live. This took place in Feb. of 2015. I have left messages here but I get no response of anyone having this problem. He is now walking with a cane so it is progressing. He will move on to a walker and then be in a wheelchair. This affects his balance and speech. He doesn't feel dizzy but he will loose his balance and fall. He is very hard to understand.
Is there any one out there who has this diagnosis or is it very rare?
His wife, Noreen

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I have been diagnosed with corticobasal syndrome at Stanford university movement clinic in October 2015 I am 76 male and walk with a cane and walker

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howardjames | @howardjames | Jan 2, 2017
In reply to @howardjames "Dear Colleen, This is concerning HowardJames and his diagnosis from Mayo Clinic in Rochester,Mn and his..." + (show)
@howardjames

Dear Colleen,
This is concerning HowardJames and his diagnosis from Mayo Clinic in Rochester,Mn and his diagnosis of Cerebellum Brian Atrophy with only 3 to 4 years to live. This took place in Feb. of 2015. I have left messages here but I get no response of anyone having this problem. He is now walking with a cane so it is progressing. He will move on to a walker and then be in a wheelchair. This affects his balance and speech. He doesn't feel dizzy but he will loose his balance and fall. He is very hard to understand.
Is there any one out there who has this diagnosis or is it very rare?
His wife, Noreen

Jump to this post

Hi Tony, and what is cortocbasal syndrone? My husband was diagnosed at Mayo Clinic in 2015 and given 3 to 4 years t live. Back then he could walk on his own but had MRI of brain and showed his cerebellum was dying. He is now using his walker and has progressed to that from a cane. His speech is also affected. It's getting harder to understand. My husband is 78.. It is progressing just as the doctor said it would. It is good to hear from someone who has something similar. I have found only one other person with this. I guess that it is very rare. But at least he is the age he is and not younger with a job and kids in college! Please keep in touch.
Noreen, wife of HowardJames.

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Liz Horne | @pec2884 | Jan 2, 2017

Hi Noreen. Daughter has been there for 25 yrs. We have often visited and once I remember driving through Swift Current. Having a time line like your husband has is upsetting. Is he aware of it or only you. Liz

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4 replies
howardjames | @howardjames | Jan 2, 2017
In reply to @pec2884 "Hi Noreen. Daughter has been there for 25 yrs. We have often visited and once I..." + (show)
@pec2884

Hi Noreen. Daughter has been there for 25 yrs. We have often visited and once I remember driving through Swift Current. Having a time line like your husband has is upsetting. Is he aware of it or only you. Liz

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He is aware of the timeline. Doctor at Mayo Clinic was very up front with us. He is just getting inpatient with his life and wishes it would be over with. I cried about it when we were at Mayo but now have accepted it. It's just hard to watch him struggling to talk and walk when he was always such a busy man.
Are you the person in South Africa? Where were you diagnosed? Noreen

REPLY
tonyc55 | @tonyc55 | Jan 2, 2017
In reply to @howardjames "Dear Colleen, This is concerning HowardJames and his diagnosis from Mayo Clinic in Rochester,Mn and his..." + (show)
@howardjames

Dear Colleen,
This is concerning HowardJames and his diagnosis from Mayo Clinic in Rochester,Mn and his diagnosis of Cerebellum Brian Atrophy with only 3 to 4 years to live. This took place in Feb. of 2015. I have left messages here but I get no response of anyone having this problem. He is now walking with a cane so it is progressing. He will move on to a walker and then be in a wheelchair. This affects his balance and speech. He doesn't feel dizzy but he will loose his balance and fall. He is very hard to understand.
Is there any one out there who has this diagnosis or is it very rare?
His wife, Noreen

Jump to this post

Corticobasal syndrome is similar to what your husband have

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Liz Horne | @pec2884 | Jan 3, 2017

Yes Noreen I am Liz/ pec2884 in South Africa. I was diagnosed locally in Port Elizabeth. I see the neurologist every 6 months. I have many more questions to ask him now as at first I was in complete meltdown and denial. Now I have read up various articles and now I realize just how difficult it is to make a probable diagnosis. It comes after many visits and as different symptoms develop. In MSA the categories are possible, probable and definite. The latter only at postmortem. The timeline I am expecting is 5 -9 years. I sometimes wonder is being on anti-depressants gives one the feeling of living in a happy bubble. I suppose it is better than being morbid. I have not had a decent cry yet and my family don't ever speak of the MSA so I get very lonely at times with no one to talk to.
Liz

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3 replies
howardjames | @howardjames | Jan 3, 2017
In reply to @pec2884 "Yes Noreen I am Liz/ pec2884 in South Africa. I was diagnosed locally in Port Elizabeth...." + (show)
@pec2884

Yes Noreen I am Liz/ pec2884 in South Africa. I was diagnosed locally in Port Elizabeth. I see the neurologist every 6 months. I have many more questions to ask him now as at first I was in complete meltdown and denial. Now I have read up various articles and now I realize just how difficult it is to make a probable diagnosis. It comes after many visits and as different symptoms develop. In MSA the categories are possible, probable and definite. The latter only at postmortem. The timeline I am expecting is 5 -9 years. I sometimes wonder is being on anti-depressants gives one the feeling of living in a happy bubble. I suppose it is better than being morbid. I have not had a decent cry yet and my family don't ever speak of the MSA so I get very lonely at times with no one to talk to.
Liz

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Dear Liz,
I am glad that I have connected with the right Liz. My husband Howard is now walking with a walker. The local doctor says he has about two more years to live. He was diagnosed at Mayo Clinic in Rochester, Minnesota about four years ago this month and the Mayo doctor gave him about 3 to 4 years to live. He was right on target with his prognosis. He said they would be checking into stem cell research but his local doctor has had contact with the Mayo Doctor and they are not doing any research. I think that this is a very rare thing that they will not do any research for the few who have it. I have only found you to have this cerebellum brain atrophy. So many have diseases that have great pain and at least there is no pain with this. We are grateful for that. He is 78. We are grateful he is not 50 with a child in college and a job. At least he is retired.
How did your daughter get to Regina, Saskatchewan? We will be driving to Alaska in the Spring when the snow quits. We have a daughter in Soldotna, Alaska and a second small house in Homer, Alaska. We love it up there. How often do you see your daughter? What is the name of the town you live in? My husband was once in Durban, South Africa with a Habitat for Humanity build with ex-president Jimmy Carter. It was long time ago.
Sincerely, Noreen

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