Cerebellum Brain Atrophy

Posted by howardjames @howardjames, Jun 5, 2016

My husband has been diagnosed with cerebral atrophy. Is there anyone with similar diagnosis? In January of 1915 he was given 3 to 4 years to live.

Liked by fastfay

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

REPLY

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

REPLY
@steph73

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

Jump to this post

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?

REPLY
@sunshinebear

Hello @flo1957 have you tried UNIVERSITY OF SOUTH FLORIDA MORSANI COLLEGE OF MEDICINE in Tampa Fla. https://health.usf.edu/care/neurology 813-974-2201

Jump to this post

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.

REPLY

Hi everyone,

I'd like to invite you to join us today, Wednesday, May 1 at 12pm CT for a video Q&A. Drs. William (David) Freeman and Rabih Tawk will be discussing all aspects of stroke, and will answer questions during the live broadcast.
Simply click https://connect.mayoclinic.org/webinar/video-qa-about-stroke-2/ for details.
Drs. Freeman and Tawk will answer questions live. Post your questions before and during the broadcast.

Return to this page, https://connect.mayoclinic.org/webinar/video-qa-about-stroke-2/ to take part in the video Q&A live on May 1 at noon CT. It will also be archived on this page.

REPLY
@colleenyoung

Frustrating that this thread has not yet attracted others to the community who have cerebral atrophy. Have you been seen at Mayo Clinic?

Jump to this post

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

REPLY
@lupita1407

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

Jump to this post

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?

REPLY

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/

REPLY
@johnbishop

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/

Jump to this post

Thank you I will let my wife know

Michael

________________________________

REPLY
@lisalucier

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?

Jump to this post

She closes one eye when she needs to read something.

REPLY
Please login or register to post a reply.