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Has anyone been diagnosed with GFAP
Autoimmune Diseases | Last Active: Oct 26 3:57pm | Replies (61)Comment receiving replies
My husband was tentatively diagnosed with an unspecified autoimmune encephalitis/possible lymphoma in Oct. 2023.
Blood and CSF sent to Mayo for testing. Everything came back negative, except the GFAP screening of CSF came back ABNORMAL . However subsequent tests to confirm came back negative.
His symptoms started with persistent cough earlier in the year, treated with steroids. By late August he was confused / disoriented. By September he was unable to complete simple tasks. By early October he was incontinent, having staring episodes, hallucinations, and psychosis.
All while waiting to get an appointment with neurologist. Finally an ER doc took us seriously and he was admitted. He was given high dose IV steroids for 5 days. He responded rapidly and discharged with lymphoma/AE working diagnosis. No steroid taper.
He was doing pretty well 80% normal.
In late November, he starts coughing again and is confused and GP gives him a 5 day course of steroids and he improves. Now he’s worse again. Balance and gait issues, confusion, short term memory is shot. Neurologist and Oncologist are taking a wait and see approach to all this. I think he may have GFAP. Sorry for the long post, but I’m completely befuddled.
Any thoughts?
Replies to "My husband was tentatively diagnosed with an unspecified autoimmune encephalitis/possible lymphoma in Oct. 2023. Blood and..."
I am so sorry you are going through this. We encountered the same confusion as you both are going through. My husband did not have all of the symptoms that yours is experiencing. His was mostly gait and sight issues at first. He was also told he probably had lymphoma and that it was hiding somewhere. That never surfaced and in the meantime was not tested for GFAP. I feel we wasted so much time trying to figure out what it was that he had.
To this day not one doctor that he has seen has ever heard of it!
I. Am always looking for more info about it and to see how people are getting on in their life, but I never seem to find anyone, so thank you for responding.
Right now just about two years into the condition he has never regained his balance fully….his legs always feel “funny” and his eyesight is not clear. We just went to see if glasses will help and they fitted him with lenses which we are waiting for.
My heart goes out to you on this journey. It’s not easy and it’s frustrating.
Stay strong. I am sure you are his advocate now as I am for my husband. ❤️
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Hello @humphrey, Welcome to Connect. I know it must be terribly concerning to have your husband diagnosed with such a rare condition as glial fibrillary acidic protein astrocytopathy (GFAP). @gardrums123 and @hassel may be able to share some thoughts or suggestions with you. You also might find the article listed earlier in the discussion helpful for learning a little more about the condition.
Here is a link to the same article and another one that is similar:
--- Autoimmune glial fibrillary acidic protein astrocytopathy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6522205/
--- Autoimmune Glial Fibrillary Acidic Protein Astrocytopathy: A Review of the Literature:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6290896/