Cerebellum Atrophy

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 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.

Right, Alex, a lot of things to worry about. That is why anyone with a serious chronic or congenital issue should have a good, professional DNA firm do a whole genome 100% analysis, not even just a 1% thing. Sure, it costs $300-500, but that is nothing compared to the cost of dying from a treatable but unknown disease. I spend nearly 300 per month on my diseases, but I have reach 81, and I hope to reach 82. When I was born, I was a floppy baby, and the doc said I would die before age 3. I learned to work hard, keep good records, and trust the science and my instincts. That package has kept me going even with FKTN, GSN, Cardiomyopathy, several forms of encephalopathy, cancers, diabetes, broken bones and ruined tissues. oldkarl

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.

I have had an atrophied cerebellum for some time now; you are not alone. Alex

@alexgoldman2 Hi Alex, yes that is all we have is ourselves and our experiences. Doctors cannot understand as we do because they do not share the same experience. I have seen enough doctors to form my opinions about them. I simply do not see them again when they offer no help or do not have a reasonable explanation for my health concerns, especially when I find them first. I make an easy exit. I am sure they don’t want to bother with me either. That is the impression they leave. I am glad to hear you are doing Yoga and have gotten relief from the headache. Yes, those headaches are awful to deal with. I had one last week. It may be lingering from my double vision. I will found out when I have my corrective eye surgery. My mother-in-law performs Tai Chi exercises in a group. She swears it helps with balance. I have not tried it yet virtually. She is 80 and in good health. I wish you well. Keep active! Toni

Hi Toni, I thought I lost you. I do Yoga every morning; no headaches for awhile. This condition seems to be outside, beyond, untreatable by the Medical fraternity. We do what we can!
Alex

@alexgoldman2 Thanks for sharing. How awful to hear the MRI did not provide any answers for your headaches. Will a different test be ordered? Have your headaches gotten any better? Does the neurologist have any idea for the cause of your nerves not functioning well in your feet? I would guess the neurologist found no answers for a cure or to stop it from getting worse since the tens unit was ordered. Hope it is helping the pain in your feet. I would think, such as in my case, doctors can not provide answers to questions because not much health information exists about the brain. After hearing their vague answers and seeing no help after my health complaints, I began learning on my own to help myself through trial and error. I have tried altering my diet and using supplements. I also am exercising. It helps with nerve regeneration no matter how long you can exercise. I roughly exercise for a half hour daily and will increase after my eye surgery to correct the double vision. I always try to keep active regardless of how difficult it can get. The key is to keep active. Hope you find some relief soon. Toni

Well the MRI was non conclusive. Huh? But the nurologist found that the nerves in my feet are not functioning properly; one thing after another. I received a tens unit or my ankle. We'll see.
Alex