Dr at Johns Hopkins seems sure I have a Paraneoplastic Encephalopathy...I know it's rear, any input will be appreciated

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Dr at Johns Hopkins seems sure I have a Paraneoplastic Encephalopathy...I know it's rear, any input will be appreciated

by Ilene54 on Mon Nov 09, 2015 04:12 PM

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I'm new here.   My story is a long complicated one, and I realize it….that’s what the neuro-oncologist at Sloan-Kettering said.  I wound up there because of a recent full body PET/MRI which showed 3 lymph nodes left axillary which were called malignant with a SUV uptake of 10, 9.3, 3.6.  I am having another full body PET/MRI on Nov 18 which will be 4 weeks since last one,  to see if there is a change, or if there is a new one that can have a core biopsy.  If not I will have to have an incisional biopsy.  A biopsy was set up with ultrasound guidance, but canceled when the radiologist saw the amount of vessels surrounding the nodes.

For the last 1.5 years i've been treated for Hashimoto’s Encephalopathy which is an autoimmune encephalopathy, which is steroid responsive. I've had 3 LP’s which have shown I have a CNS inflammation, causing OCB (6,11,18), increase: IG, protein, WBC, RBC, and several other things, never have they found the antibody attacking my brain, but since there are only 17 known antibodies, and knew ones are always being found, and the markers are in my blood and CSF the diagnosis was made.  CSF also reveiled no malignant cells, but from what neuro-oncologist just told me at Sloan Kettering, that too isn't very reliable, known malignancies that are paraneoplastic aren't well known. My symptoms have included, severe headaches, concentration problems, I have had hallucinations and personality changes, some cognition changes. Currently I thought from medication I have no stamina, I can’t walk from my bedroom to den without becoming short of breath, and I’m wheezing a lot (I do have asthma, but have never wheezed like this). I have been on solu-medrol and IVIG infusions, imuran, and oral steroids, which I'm still on.  I went to an neuro-immunologist at Johns Hopkins in September who put me on Imuran (an immune-suppressant) but wanted me to have the full body PET/CT when starting it. After he got the report, he said that I have a paraneoplastic encephalopathy, and need a medical oncologist to find where the tumor is that is attacking my brain. He took me off the imuran, and said what ever chemo I’m started on will help me. I know if I have this, it’s very rear (1 in 10,000), but am wondering if anyone has heard of it. I’ve attempted to find information on it, but have found it difficult. The neuro-oncologist said if the nodes are same size, it will be his recommendation to remove them for biopsy…that even though this is rear, my symptoms and lack of “response” to some of the treaments that usually work, makes this a reasonable diagnosis.  I feel lucky the PET was ordered, But not so lucky if I’ve had this for 1.5 years! Any feed back will be appreciated.  Thanks in advance.

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