Cerebral Brain Atrophy: Anyone else out there?

oldsusanne55, I looked them up, but they are not right for me. I use a cane in the house and a wheeled device when I go out.

No, the condition seems to have its own time line and I am doing my best to flow with it. Dizziness, and headaches a night are newest on the hit parade.

@pec2884 I am working in some inherited diseases which are making a mess of my life. One thing I have clearly learned about my cerebral white matter disappearance: Have a legitimate medical genetic analyzing company Nebular do a complete 100% analysis of your genetic structure. If you can find no gene that might cause your problems, it may not be inherited. With mine, I have learned that I have both Fukutin Muscular Dystrophy (FKTN; OMIM:606596) and Gelsolin(GSN; OMIM:105120). The general rule is that, if you don't have the gene or some genetic evidence, look somewhere else. But always be aware that almost ANY gen CAN mutate, but not necessarily will. I went through a lot of stuff which could have caused mine to mutate. Radon, Round-Up, other chemicals, cold, hot, sunshine, my own cooking (I suppose) etc. My cerebellum issues were seen years ago, but the diagnosis only started with genome analysis and good brain imaging..

Hi @alexgoldman2 I believe physical exercise will help in the long run so continue with what you can. As for the headaches hang in there. They will occur less frequently. I now get my headaches 1-2 times per month. In the beginning I tried Tylenol. It did nothing for me. I found a bag of ice on my head to be more helpful. I used that throughout the night to get sleep. Recently, I tried a tea recommended by another member to decrease the intensity or completely eliminate my headaches. Keep on learning answers for yourself and remember to always keep a positive attitude because you are a survivor. It is a tougher new way of life for us. We need to make the most of what we can do. Toni

I have been diagnosed with chronic microvascular ischemia of my left frontal lobe corona radiata. My neurologist just said to manage it with my lifestyle changes that I have made to try to manage my extensive CAD (CAC over 1000). I've already had a TIA. I'm only 64 and my only symptoms seem to be some balance issues and some possible cognitive/memory decline. Since this disease is basically causing loss of brain matter due to blood flow interruption I wondered if it is relevant to this thread. There is no cure. Anyone else with this problem? I feel like I'm waiting to see if my heart or my brain go first!

I was diagnosed with similar degeneration in the brain at 31 years old. Mine started with the vermin’s, mid-brain and pons and went from there. I lost mobility fairly quickly but worked on it for years in and out of wheelchairs and walkers. Spent months in-patient at brain & spinal rehab facilities like TIRR, etc. My issues with atrophy wasn’t limited to just the brain though. It hit ALL of muscles and thus became more systemic. I did have a stroke in 2015 and have some heart weakness. But as most people have indicated, this is a wait-and-see game and it’s very complicated. Feel free to message me if you have additional questions. I wasn’t given much hope in the first year or two. I’m now 43 and have been learning to navigate the muddy waters for much longer.

Dear, and I mean dear Menvillle, I am so sorry that you have traveled this road. I feel sad that my body doesn't work, though my mind is clear. I trust that is true for you, though your body stops working, your mind sounds fierce I wish you well.
Alex

Hello avmbellar, What is the tea that worked for you? Thank you for your kind wishes; I am doing the best I can whenever I am able.
Alex

Hi @alexgoldman2 the tea is called Shifa Tea which can be purchased through amazon. I followed the member’s directions to make a concentrated tea. I did that the first couple of times but have decided now to try the directions on the bag for a hot cup of tea. For the concentrated version: Add 1/2 the bag of tea to a quart of boiling water. Let steep for an hour. Save the tea in the refrigerator. Put a few ounces in a cup and add hot water for a hot cup of tea to sip on. Since I only needed 1-2 cups per month, I chose to freeze it instead in an ice cube tray. To make iced tea I would take out a couple of pieces and add a little water to sip on slowly. When I sipped on the tea as soon as I felt the headache coming on I had better luck. The headache would go away. The tea seemed to decrease the intensity of the headache the longer I waited. I will be happy to answer more questions. Best of luck. I hope it works just as well for you or even better.Toni

Dear avmcbellar, Thank you for the Tea tip; I will check it out!. Alex