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Autoimmune Cerebellar Ataxia vs. Autoimmune Encephalitis

Posted by vball91 @vball91, Sep 15, 2023

I’m very confused. I don’t know what to call what I have. My old neurologist called it autoimmune cerebellar ataxia. She left, and my new neurologist said it’s a form of autoimmune encephalitis - of the cerebellum. My old neurologist said it wasn’t autoimmune encephalitis. I don’t know what to think. Can anyone provide clarity?

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Becky, Volunteer Mentor | @becsbuddy | Sep 15, 2023

@vball91 good evening and welcome to Mayo Clinic Connect. Members try their best to answer questions and give support and tips.
You’ve asked about cerebellar ataxia vrs, autoimmune encephalitis. Ataxia means something is causing your gait to be off. And encephalitis is an inflammation of the brain. I had cerebellar ataxia which was finally diagnosed with Clippers, chronic lymphocytic inflammation with pontine perivascular involvement responsive to steroids. Long name!
The discussion group https://connect.mayoclinic.org/discussion/clipperslooking-to-connect-with-others/ Is only moderately active because we have so few members. Be sure to check it out!
Was the neurologist at your local hospital or a comprehensive medical center? You might go to a medical center or university teaching hospital. A second opinion will give you a diagnosis and treatment options
https://connect.mayoclinic.org/discussion/ataxia-1/. There are also other discussions on ataxia the may be helpful

May I ask how you found Mayo Clinic Connect?

REPLY
1 reply
lasks | @lasks | Sep 16, 2023

My understanding is that cerebellar ataxia is a symptom that can be caused by many different things. Encephalitis can be one of those causes. I am diagnosed with brain stem and cerebellar autoimmune encephalitis. There are also many causes of encephalitis that can affect different areas of the brain.

REPLY
vball91 | @vball91 | Sep 16, 2023
In reply to @becsbuddy "@vball91 good evening and welcome to Mayo Clinic Connect. Members try their best to answer questions..." + (show)
@becsbuddy

@vball91 good evening and welcome to Mayo Clinic Connect. Members try their best to answer questions and give support and tips.
You’ve asked about cerebellar ataxia vrs, autoimmune encephalitis. Ataxia means something is causing your gait to be off. And encephalitis is an inflammation of the brain. I had cerebellar ataxia which was finally diagnosed with Clippers, chronic lymphocytic inflammation with pontine perivascular involvement responsive to steroids. Long name!
The discussion group https://connect.mayoclinic.org/discussion/clipperslooking-to-connect-with-others/ Is only moderately active because we have so few members. Be sure to check it out!
Was the neurologist at your local hospital or a comprehensive medical center? You might go to a medical center or university teaching hospital. A second opinion will give you a diagnosis and treatment options
https://connect.mayoclinic.org/discussion/ataxia-1/. There are also other discussions on ataxia the may be helpful

May I ask how you found Mayo Clinic Connect?

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Thank you. I will look into CLIPPERS. I found Mayo Clinic Connect because I went to Mayo Clinic in Rochester, MN for a second opinion. The doctor there said the same thing as my doctor at home (Massachusetts General
Hospital in Boston, MA). Both said it’s probably autoimmune cerebellar ataxia. Two neurologists at MGH have said it’s a form of autoimmune encephalitis, and two said it’s not. The doctor at Mayo said it’s not AE.

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