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Cerebellum Atrophy
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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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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2 ReactionsMy 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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2 Reactions@colleenyoung
@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.
Just read today that some med that is available deals with cerebellum shrinkage. Mayo should know.
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1 ReactionHello @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.
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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1 ReactionWelcome 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?
@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
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.