Cerebellum Atrophy

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

Welcome to Connect, @dkeg. We're glad you found this discussion group. In addition to @howardjames (Noreen) who's husband has Cerebral Atrophy and @lisapraska who's young son is living with it, I'd like to introduce you to @pec2884 (Liz) who lives with cerebellar atrophy. You can read more conversations between Liz and Noreen here:

- Cerebellum Brain Atrophy https://connect.mayoclinic.org/discussion/cerebellum-atrophy/

DKeg, the dreams and hallucinations must be troubling. How do they affect you and how to you cope with that?

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?

I have it too. I don’t think there is any cure or help for us. Mayo Clinic in Jacksonville showed me an x ray of my decreased cerebellum and suggested it was genetic. Had genetic test and it’s not genetic. Then why? I have been offered no hope or explanation. I have always lived a healthy lifestyle- walked every day, good heart and kidneys, no smoking or alcohol. Strange about the silence from doctors. Makes you mad, doesn’t it? No answers. I simultaneously developed Hydrocephalus (no reason given. Had a shunt placed in brain. Thinking got clearer but ataxia is worse. I tried stem cell therapy, but won’t know if it will work until October, since results come 6 months after treatment. My heart goes out to you and I would love to hear from you. The idea of slowly declining with no help on the horizon, and assisted suicide illegal, is beyond my idea of horrible. And yes, you sure do feel alone. Please let me know how you are.

Terrible for you, so sorry. I have the damage to my cerebellum also, but no one ever gave me an idea of how long I would live. At least it’s not painful. Do you experience pain?

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?

Gee, there are a lot of things to worry about. Alex

@alexgoldman2, several members of my family have disappearing white matter in the Cerebellum, sometimes called by other names. Nearly all of the family have various forms of Multiple Myeloma. I and a couple others have Gelsolin and FKTN. Others have LECT2, Apolipoprotein, full onset MM, etc. But nearly all have the Cerebellum issues, along with other stuff. One sister and her daughter have died in their 6th decade of "unknown causes". Another is near death, and my son is approaching it. Make sure that you are genetically tested for these and similar, especially concerning the heart and brain. The quickest and easiest test is the ECG, showing the difference between the Left Ventricle Systolic and Diastolic, compared to the Right Ventricle Systolic and Diastolic. Also the presence of Long QRT segment. Also things like organomegaly, cardiomegaly, tongue (glossal) megally, many cancers (my surgeries have been for thyroid, larynx, gall bladder, melanoma, etc. My retinas have a dystrophy, which seems common to cerebellum atrophy. Anyway, also get a good clinic-grade full genome analysis to lock it it. At 3-4 hundred dollars, its a bargain.