Cerebral Brain Atrophy: Anyone else out there?

Hi Noreen. I have been reading about your husband. How is he doing now? Is all very sad and my thoughts are with you both. My mum is 70 next year and has just been diagnosed with this. It's taken a long time (3 years) for diagnoses. She started swaying around 4 years ago, jump to today and she can't even walk with a frame. Her body goes into spasms, even freezes. Her right side is effected more, her arm and leg feeling dead. She has had a stair lift fitted and next few weeks a wet room too. She gets so angry and it's heart breaking to see her like this at all. We have been told of life expectancy at all. She has other conditions including conduction disease and needs something fitted. We know it's a rare condition and here in the UK the doctors are very vague. She recently had a DNA test done to determine if it's Genetic (she was adopted and didn't ever know her real parents) so awaiting results. Her speech is sometimes a little slurry but when she is tired. We don't know how long or how bad this gets but the more research I do, the more heart breaking the reality becomes. Thinking of you and your husband, hope you are ok x

I have had this diagnosis. About 6 months ago. Have no answers to what caused or what to expect. Just had another brain MRI with contrast today. Really in the dark of what all this means. I'm a 36 Male

My son has I’m told a very rare condition which has seen his brain shrink over the last few years. He has an immune deficiency and has since birth. He’s 21. He now has a tremor in both hands, balance issues, speech deteriorated and memory loss. Does anyone recognise these symptoms and able to point me in right direction. We a in the uk but I will travel anywhere if it will help him. Watching him deteriorate is breaking my heart

Hi, @steph73 - You may notice I combined your discussion with an existing one titled, "Cerebellum Brain Atrophy." I did this so you could meet a few of the other members who have posted about this condition. If you are responding by email you can click on VIEW & REPLY to see where your post is and to read through some of the other posts made by members on this topic.

Hoping that @adrenaline @07851930740 @menville @flo1957 @howardjames and others will return and offer their support and talk about any experiences they may have with autoimmune cerebral atrophy with symptoms of tremor in both hands, balance issues, speech deteriorated and memory loss as you face this with your son's condition.

You mentioned wanting others to point you in the right direction, @steph73. Would you prefer they talk about where to be seen, what therapies might be helpful, or something else that might help you with your son?

Hi sunshine! I am just seeing your post! (I actually may have seen it but have forgotten). I have not been to OFSFMCOM. Because I have been repeatedly dismissed by the medical community, I had stopped seeking medical help. Here are a few reasons why I stopped: Because my GP could not understand why my tests were coming back with several bizarre results, I was asked if I was drinking antifreeze! I had gone to a local ER (for a suspected kidney stone) and, after an abdominal CT scan, the doctor come in and told me that my appendix was pink and healthy and my gallbladder showed no signs of stones and was also perfectly healthy. I had my appendix REMOVED in 1981 and my gallbladder REMOVED in 1998!!! Then, when I saw my GP for the hypertension, the day after the ‘crisis’, the doctor took my BP, which was still 198/120), when I told my doctor about a few other symptoms I was concerned may have been related to the high BP, his response was, “Well, you could have read all of that on the posters on my walls!” Sigh!
I had continued with my pain management clinic, as my pain continues to worsen (and, because of the ‘War on Opiates’, my dosage has been drastically cut). I tried desperately, to focus on participating in life and just ignore my symptoms. I just couldn’t take the dismissals or the comments, basically telling me they believe I am just a nut job!
So, I did my best to ignore my health issues and focus on life. Until recently. My BP shot up to a ‘hypertension crisis level’ (235/123), I am getting increasingly clumsy and my memory issues and cognitive skills, are rapidly deteriorating. Even though I am frustrated with the medical community as a whole, I can no longer ignore my symptoms. At this point, I am terrified! I am not only terrified because of my mental deterioration, but I am terrified that the doctors will be unable to put the pieces of this puzzle together and I will, once again, be dismissed as a hysterical middle aged female or a wacko!
I have, just recently, gone back to my neurologist here in FL and I am now having several tests to see if the atrophy has progressed. I have a MRI tomorrow.

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My wife at 53 years of age was diagnosed with cerebellar atrophy and has severe ataxia and vertical double vision. Cannot walk without a walker. I am wondering if anyone has read any articles about studies that have been done for treatment. I read one stating high doses of vitamin E and another about starting a gluten-free diet. We know there is no cure but am looking for anything to halt the progression or alleviate some of the ataxia

Hi, @lupita1407 - welcome to Mayo Clinic Connect. Not being able to walk without a walker sounds challenging. It sounds as though you are being an excellent advocate for your wife.

Hoping that @flo1957 @steph73 @menville @howardjames may have some input for you on studies they have read about or participated in. @johnbishop also may have some insight on relevant studies.

How is the vertical double vision impacting your wife's day-to-day life presently?

Hello @lupita1407 -- I'm wondering if the following eye exercises for double vision might be helpful?
https://www.livestrong.com/article/226753-double-vision-eye-exercises/

Thank you I will let my wife know

Michael

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