Cerebral Brain Atrophy: Anyone else out there?

Hello @pettis and welcome to Mayo Clinic Connect. I can read the struggle in your post and can understand your frustration. I am hoping members like @howardjames and @oldkarl can come back to the discussion to share their experiences and connect with you.

When was the last time you were in touch with your team in Jacksonville?

Quick answer, and more later. First, what kind of genetic test did you have? Full genome or 1%? What is the specific name of your issue. I have "disappearing white matter in my cerebrum, as well as in area 24 and 9." This is genetic. Second, Hydrocephalus is genetic, and I have the gene. Get yourself a full genome analysis from professionals, such as at Dante, Sequencing.com, Ambrygen.com, etc. You have to get help now. Medicare is covering most of this, if the clinic and lab are certified and your doc signs off. Old Karl ps. I will be glad to look up the gene(s) of hydrocephalus I have, if you have not done so.

i'VE YET TO FIND folks with whom I have discusses cerebellum atrophy in the past. Alex

Hi Alex,
Here is the active discussion where you were connecting with others:
– Cerebellum Brain Atrophy https://connect.mayoclinic.org/discussion/cerebellum-atrophy/

Click the link to get started and post a reply.

Hi all,
@pettis @howardjames @alexgoldman2 @pec2884 @dmkmom04 @tonyc55 @ldrake101 @menville @flo1957 @07851930740 @ace123 @pathakes @adrenaline @lupita1407 @silverlinning @idfiddler @oldsuzanne55 @helenfrances @keithl56 @avmcbellar

I wanted to re-animate this discussion. Any updates to share? How are things in the corner of your world? How are you doing today?

Not great. I lost my balance and fell on my patio on Sat. and then passed out and did a face plant in my yard Sunday resulting in a bloody nose and an ambulance ride to the hospital. EKG this pm and another MRI and holter monitor. Trying to figure out f is my CAD or white matter disease causing all these problems. I'm hoping it's cardio because then there might be something they can do for me.

Keith, I do hope that you'll get answer soon to the root cause. That sure must've hurt to take such hard falls on hard surfaces. Until you're able to get things figured out, what precautions are you taking to prevent further falls? A walking aid?

At this point I'm limiting my activity somewhat. Today's EKG showed some differences from the last but it could be that my blood pressure was so low and my heart was working harder. I'll feel better once I get the holter monitor results. Thanks for asking.

Thanks for the info and willingness to share info on your conditions and giving potential info for @pettis
I will share a little. Both of my grandsons were born with hydrocephalus They were able to shunt both of them in their first week of life. One is 5 and is thriving. The other is 3 months and doing well.

I am intrigued by the gene you mentioned for the hydrocephalus. Is that an Autosomal recessive type of gene?

Peace
Larry H

Hello Howard and Noreen:
I can understand about being frustrated trying to find people that share the diagnosis cerebellum brain atrophy.

I an working to do some research on this.

Yourself and @pettis are looking information and others to connect with.

Colleen has tagged many of the folks that have chimed in on this thread to bring those folks back to share any updates, things they may have learned and for support.

How long did it take you from the time you saw the doc to the time of diagnosis?

Peace
Larry H