Did anybody develop limbic encephalitis associated with CLL?

Posted by sveta25 @sveta25, Jan 3 12:52pm

My husband was diagnosed with CLL in 2023, he still did not have any treatment and is in W&W mode but recently he was diagnosed with limbic encephalitis and is having test to determine what caused it, neurologist think that it’s associated with CLL, did anybody else experience the same problem?

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kobebeef2026 | @kobebeef2026 | Jan 3 2:40pm

https://www.encephalitis.info/types-of-encephalitis/autoimmune-encephalitis/limbic-encephalitis/
Limbic encephalitis
https://www.mayoclinic.org/diseases-conditions/autoimmune-encephalitis/symptoms-causes/syc-20576380
Autoimmune encephalitis
https://www.medlink.com/articles/paraneoplastic-limbic-encephalitis
Paraneoplastic limbic encephalitis

Disagree with neurologist that its associated with CLL

Colleen Young, Connect Director | @colleenyoung | Jan 3 3:41pm

@sveta25, I see @kobebeef2026 provided some helpful links with information about limbic encephalitis.

As per Mayo Clinic For some people, autoimmune encephalitis is triggered by certain cancers or infections or by some medicines.

When cancer related, it's known as paraneoplastic utoimmune encephalitis. It sounds like your husbands care team is taking care to determine the underlying cause so that he can get the right treatment. Read more here: https://www.mayoclinic.org/diseases-conditions/autoimmune-encephalitis/diagnosis-treatment/drc-20576406

sveta25 | @sveta25 | Jan 4 12:14pm

In reply to @colleenyoung "@sveta25, I see @kobebeef2026 provided some helpful links with information about limbic encephalitis. As per Mayo..." + (show)

@colleenyoung thank you Colleen, he had already blood test and is having EEG tomorrow. We switched his oncologist to a new doctor at the FCS, hopefully he will be more attentive and will help my husband.
Have a great 2026

sveta25 | @sveta25 | Jan 5 11:44am

In reply to @kobebeef2026 "https://www.encephalitis.info/types-of-encephalitis/autoimmune-encephalitis/limbic-encephalitis/ Limbic encephalitis https://www.mayoclinic.org/diseases-conditions/autoimmune-encephalitis/symptoms-causes/syc-20576380 Autoimmune encephalitis https://www.medlink.com/articles/paraneoplastic-limbic-encephalitis Paraneoplastic limbic encephalitis Disagree with neurologist that its associated..." + (show)

@kobebeef2026 Tahk you very, very much for the info.

sveta25 | @sveta25 | Jan 16 12:47pm

My husband was admitted to SMH, apparently his CLL is now in his brain, we were told by the oncologist that it is very, very rare, I wonder if there is anybody in this great that had this situation?