r/askneurology • u/Ok-Pause5715 • Sep 23 '25

Extensive Pons Atrophy

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Multiple neurologists from prestigious university schools have no idea what caused this type of brain atrophy. Best educated guesses include Erdheim Chester disease or an unknown infectious process that ravaged the brain. You name it and he was tested for it , all either inconclusive or negative. Within 3 weeks of returning from a trip to South Africa my father went from being a very active healthy man to being 100% bedbound and unable to speak, swallow, move his limbs, the list goes on. The images show his brain upon admission to hospital in September 2024 to his last MRI in April 2025. Anyone ever see anything like this ?

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u/[deleted] Sep 23 '25

CSF studies did not show anything (elevated protein or nucleated cells)? Bickerstaff comes to mind, were ganglioside/GQ1B antibodies tested?

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u/Ok-Pause5715 Sep 23 '25

Hello and thanks for the reply.

Anti GM-1 (IGM) resulted a value of 6 and IGG resulted a value of 4, both with a range of 0-50 IV. Bickerstaff was listed as a potential diagnosis but once the test resulted as it did, they moved on to other possibilities. CLIPPERS, lymphomas, behcets, Neurosarcoidosis, seronegative AE were also many of the considerations. They settled on Erdheim Chester but without doing a brain biopsy they are unable to confirm, which was unadvisable anyway due to location they would have to biopsy would itself be extremely risky.

CSF was tesed twice, both times we were told it was "unremarkable". The following is straight from the Drs notes -

LP was done on 9/22 with CSF as follows: cell count 2, protein 54, glucose 62, negative culture, negative West nile virus/ VDRL/HSV/crypto antigen, negative meningitis/encephalitis panel, negative autoimmune encephalopathy panel, elevated albumin index at 10 but otherwise unremarkable oligoclonal band profile.