Cerebral Brain Atrophy: Anyone else out there?

@menville I am new to this group, and somewhat, newly diagnosed. I have so many questions! I am only 60 yrs old. I am having trouble finding doctors who will take me seriously and/or, know anything about Cerebellum Atrophy! I don’t know how to send a private message yet, but, I actually think all public questions, and answers, anyone can provide, would be helpful to everyone who has a reason to read this thread! I would like to thank you all, for sharing your stories with the world! Up until now, I have been suffering alone, not knowing there were others suffering with Cerebellar Brain Atrophy, without a diagnosed cause!
I thank you ahead of time, for any answers and information you can give me!
(It appears that most of the posts are not current. Is this thread still active, or am I alone again?)

@flo1957 You’re definitely not alone and I was 30 years old when they found mine and deteriorated very quickly. I can tell you how very rare this is, that I have been studied extensively by numerous world-class institutions and I continue to be here to help people like yourself newly diagnosed to help support and provide any wisdom that I may be able to offer. If you can, let me know how your diagnosis came about and what symptoms and questions you are struggling with so that I can directly help explain or give you some information on how to help. If you click on my profile, you’ll see my very first post AND that I am still here, despite being told that I wouldn’t be. I can tell you that having a rare condition is frustrating but fortunately I have fought for a long time to help people like ourselves maneuver through the darkness.

Can anyone in this group help me? I don’t know what type of neurologist I should be looking for. I live in Florida. Can anyone recommend someone?
Mayo Clinic originally found the condition, however, they were focused on the brain tumor and never even discussed the atrophy! But now that my symptoms have become debilitating, it’s become clear, I need to address this issue ASAP!

Hi @flo1957, welcome to Connect. Noreen, @howardjames, reached out to me recently to say she wasn't getting email notifications from Connect. I'm working on remedying that situation for her. Hopefully she'll be back soon to let you know how she and her husband are doing.

Have you considered going to Mayo Clinic in Florida for a follow-up specifically about the atrophy? The team there will have access to your records from MN and be able to coordinate your care.

@flo1957, did you see the response that @menville wrote to you here?

I am actually just now seeing the replies! I'm so glad to know this is still active!!

Hi i have cerebal atrohy is it the same as cerebellar atrohy i was diagnosed in 20 11 at 47 now 55 years old ive just been left also have small vessel ischemia with progression and white matter also been left nobody given me any detailed info now my health has deteriatde slow walking muscle waekness and fatiuged achs muscle aches

Hi i have cerebal atrohy and smal vessel ischeamia disease with progression and some white matter i have just been left to get on with also struggling to walk slow walking shuffling muscle aches whitch slows me down further cognitive problems thinking p dropping things no energy please could you tell me if you think its cfs ms or parkinsons nobodys ever told me the reason why ive got the brain disease ordone more tests and a neorologist i saw one time said its not neurolical i dont have neurolical problems even a private neurologist said the same but everything i read says otherwise

Hi,@07851930740,
Were you asking if Cerebellar Ataxia and Cerebellar Atrophy are the same thing? I actually had the same question! Does anyone have that answer?
In what country are you being seen? Actually, only a doctor that specializes in Cerebellar Atrophy and causes, can answer your questions. It is unfortunate, but some people never find a cause or a disease that is responsible for their atrophy. My suggestion would be, do not give up! See as many specialists as you can until you get a satisfactory answer! If you do not have insurance, many clinics have generous benefactors who would pay the costs of your tests and doctors fees! (Like Mayo Clinic in Rochester, MN) You simply ask for the form to fill out. You can ask any clinic or neurological center if they have similar programs. Another option would be to find a clinical study near you. Some studies even pay the patients for participating. You could potentially get paid as well as diagnosed.
If you need help finding a clinic or a study, I am guessing the good people at Mayo would be of great assistance plus, there are many websites with directories. Best of luck to you!

One might consider where you live and work? City or in rural area? Any chance you were a farmer? Do we really know what certain chemicals do to some people? Exposure is everywhere. Rural might be a fair amount different than in the city. Just a thought.