Cerebellum Atrophy

@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

I, Alex, have the same diagnosis; the Medical world has yet to wake up to this problem

Hi Toni, I haven't heard about the MRI yet; the headaches are in the cerebellum and nothing seems yet touch them. Alex

I am sorry @alexgoldman2 for the misunderstanding. I found my last trial worked the best for me which was to place one serving in the tea ball and let it steep for several minutes in hot water. In fact I never removed the tea ball from my cup. I sipped the hot tea slowly without sugar or milk. Did you try the bag of ice on your head? It didn’t take the headache away for me but it did decrease the intensity. That was a big help so I could at least sleep. Tylenol offered no relief at all. I hope you get more information through the MRI results. Did your doctor suggest a pain medication for your headache? Mine did but I refused to take a painkiller. Toni

I had terrible headache yesterday, nothing seemed to work, except time. i'll let you know what the MRI showed when I know.