Cerebellum Atrophy

Welcome back to Mayo Clinic Connect, @alexgoldman2.

I sent you along email; I guess you didn't receive it.
Any way, I waa diagnoset some 13 years ago. I have seen 5 Neurolgists, one a few months ago, most of them were,unanbleor unwilling to help. one, years ago was kind and patient.
There is such a specialty called a Neurolgical PT; she was most helpful.
By the way, they are doing research on Cerebellum Atrophy in France.

Welcome back to Connect, @menville. Things have been updated since you were here last. I hope you like the new look and feel.
I'm so glad you returned to offer your first hand experience with cerebellar atrophy or degeneration. I'm sure that @pec2884 @howardjames and @lisapraska would very much appreciate connecting with you.

I'd like to hear more about how you were diagnosed. Was it a long journey before you got the correct diagnosis? I can imagine that cerebellar degeneration wasn't the first thing that was suspected given that you were only 30 at the time.

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?

I was recently diagnosed with significant cerebral atrophy which is not related to dementia or Alzheimer’s although I was also diagnosed with mild cognitive impairment. I suffered a very severe TBI in 1997 and a more minor one in 2015 that are thought to be the cause. I’m wondering if anyone can help with what to expect. I’m a mess of emotions and anxiety right now since I have to wait another year to get a timeframe but the symptoms are severe enough to require the neurologist appointment according to my PCP and a personal call from the doctor to give the diagnosis instead of a nurse. Any advice is truly appreciated!!

I was recently diagnosed with significant cerebral atrophy which is not related to dementia or Alzheimer’s although I was also diagnosed with mild cognitive impairment. I suffered a very severe TBI in 1997 and a more minor one in 2015 that are thought to be the cause. I’m wondering if anyone can help with what to expect. I’m a mess of emotions and anxiety right now since I have to wait another year to get a timeframe but the symptoms are severe enough to require the neurologist appointment according to my PCP and a personal call from the doctor to give the diagnosis instead of a nurse. Any advice is truly appreciated!!

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?

I also have brain atrophy, just diagnosed accidentilly by CT scaqn when I went to immediate care because of an extreme headache in September 2023, I still have not seen a neurologist and don't have appt until late August, 2024 My PCP says it can either be mental or physical problem [or both] Have searched the internet to try to see what to expect. The literature I have found leads me to think it might be Parkinson's. Although, none of them mentioned brain atrophy. I have had falls for many years and I am 88 yr old, live alone. I am anxious to get a diagnosis, since I think the brain atrophy is just a symptom. Anyone else out there waiting in limbo to get into a neurologist.