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.

I began having coordination issues and excruciating pain in my head (right hemisphere) and my muscles felt like they were being torn from the bone. I was also having some significant cognitive issues and as you suspected, put through the proverbial ringer of specialists at UT Southwestern in Dallas, Texas. I went from wearing 5” Stilettos to work to using a wheelchair within 6 months. My doctors in Dallas quickly realized I needed more help then what they could offer. A brain MRI indicated two hemangiomas and some lesions in the area of the head pain, EMG & NCV tests indicated some factors that led them to appeal to Mayo Clinic in Rochester, Minnesota to evaluate me for some type of Neuromuscular disease. They also had found that my bladder muscle had atrophied, which led them to suspect MS. But there were also tremors and rigidity and a family history of ALS. Mayo took my case and discovered the cerebellum degeneration nearly immediately but other than never seeing it someone so young, they didn’t know the cause nor the way to slow down the degeneration. Spinal taps indicated it may have had a mitochondrial disease at its root and they proceeded with a very painful muscle biopsy to help them narrow the field. Unfortunately, all it indicated was that my muscles were atrophying naturally and again no way to determine why. Autonomic Nervous System testing indicated there was indeed a problem, and they also discovered small fiber neuropathy may be the source of the extremity pain. I was also suffering from seizures of several different kinds. My heart muscle had also shown signs of prolapse acquired during this time. Immune system issues, including nine cases of Shingles (which attacks nerves), was just another system that seemed impacted by this unknown neurogenerative problem. My gastrointestinal system was also atrophying, indicating that my esophagus and vocal cords could cause some more severe problems. Although I was having some swallowing difficulties, fortunately I still have my speech. My case was and still is a mystery. I have had 24-hour care for the last nine years and after four years of diagnostics, doctors have been resigning to pure symptom management as they are unable to help me in any other way. The NIH paid to study me and still have not gotten any closer to a possible outcome or outlook other than pain management, assisted living and psychiatric care to deal with the catastrophic life issues that are part of living without knowing. No one can convince me Mayo wasn’t the right place to go; I stayed with them for all these years as other institutions literally are years behind this. I have had devastating losses, injuries and daily struggles but greatful that I am still here. I transferred to the Scottsdale Clinic three years after leaving Rochester as my diagnosing Neurologist has never stopped researching and trying to evolve as I do. Although this is broad, I am happy to help the other families to understand a little more of what they are going through and if they have any questions or thoughts they care to share.