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@paulatjohn738

I wonder if it is paraneoplastic syndrome. The hematology oncologist here in Naples hasn't heard of it. I meet with him again tomorrow. I was originally diagnosed at Mayo Rochester August 2022 and recommended for routine follow-up. My GP sent me to a local neurologist who sent me to the hematologist here. My question: is the direction of my lab results and the suspicion of paraneoplastic justify a trip back to Mayo? I have never had a bone marrow biopsy or a Bone Density Scan. I did have spinal puncture done in Rochester (it was negative for whatever they told me they were looking for).

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Replies to "I wonder if it is paraneoplastic syndrome. The hematology oncologist here in Naples hasn't heard of..."

It’s never a bad point of judgment to seek a second opinion if you’re concerned that your case is becoming more complicated that it was when diagnosed a year ago. It sounds like things have changed since your initial diagnosis?

A bone marrow biopsy could give your doctor a clearer picture of what’s going on with your overall marrow health…the heart of the blood manufacturing center of the body. Though you have these other autoimmune conditions and it might be useful to have the input of a rheumatologist along with your hematologist. Mayo has an excellent reputation for working collaboratively with different specialists all on one team so that you’re not piece-milling your symptoms and treatments. I am a bit biased, having gone through some major blood cancer treatments and SCT at Mayo, but if this were me, I’d consider returning to Mayo to have a followup.

Are most of these auto immune issues relatively new after your diagnosis? Have they worsened over the past year?