RecipeForDisaster Posted January 6, 2022 Report Share Posted January 6, 2022 My cardiac PET didn’t reveal anything other than scattered bilateral inflammatory/reactive lymph nodes (I’d love to know why). I’m kind of at the end of my diagnostic road here, unless NIH accepts me (the doctor hasn’t finished the application yet). I am very uncomfortable and not sleeping… nothing is helping enough. It’s mostly the air hunger, chest discomfort, and pounding that are the worst right now - still very faint and dizzy, but I’d actually prefer more passing out to this continuous discomfort. … I saw a new neurologist who repeated my Washington University neuropathy panel(not resulted yet after a few weeks). My IL10 and FGFR3 were quite abnormal last time - I think he is leaning towards another SFN biopsy (last one, from another neurologist, was insufficient but didn’t show anything). After that, maybe IVIG. Has anyone had helpful plans following these tests? My ANA is persistently positive in 2 ways(homogeneous and speckled) and I have positive immunofluorescence on the Mayo paraneoplastic panel, but that’s all. I definitely have neuropathy, but we don’t know why. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted January 24, 2022 Author Report Share Posted January 24, 2022 I finally got the results of my FGFR3 and it’s now 10,000! It was 7,000 before and the upper limit is 3,000. I think this may pave the way for IVIG. Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 25, 2022 Report Share Posted January 25, 2022 @RecipeForDisaster - I hope they will give you the IVIG and that is will make a world of difference for you. Many people here had very good improvement on it. Best of luck!!! Quote Link to comment Share on other sites More sharing options...
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