Reply To: not really new but still desperately in need of help

wow that is a lot to take in….my head is still spinning–lol. My cidp was considered paraneoplastic, i have had a complete pet scan, several ct scans,and mri to rule out any cancers–none found.
My thymus gland is also larger than what it should be for a person my age, after 3 ct scans, a MRI and seeing a thoracic specialist it was determined that it is fine, it just hasnt shrunk as much as an average person my age. removing the thymus can be a pretty invasive surgery unless you find someone who is able to do it lapriscopically (there are a few who do it this way, but not a lot) most crack the chest bone remove the thymus and then wire the chest back in place. So first be sure there really is something with your thymus, get a specialist to review your tests with you, then find out what they expect to accomplish if they do remove it, removal of it has proven to be effective in people with a MG diagnosis. Then definitely look for someone who will do it lapriscopic—–sounds much easier to me 🙂
I did a little research on the thymus, because it is responsible for antibody production/regulation. I was actually hoping that was what was causing my neuropathy—get it out and be done with it—how nice that would be 🙂
you must have had a paraneoplastic panel done–looking for abnormal antibodies. I go to a hosp in MA, they had to send this test out to Mayo to be done.
Also are you thinking–toxic neuropathy, from the antibiotics? I do remember reading somewhere that some antibiotics have neuropathy as a side effect—-I google a lot!!!
In my case I have a VGKC antibody which is paraneoplastic—hence all the cancer searching work-ups. I also have the small fiber involvement with axonal and demylinating features.
I sought my second opinion at the mayo in MN with a dr very experienced in cidp. His thought was that the antibody was just “a marker of cidp” but not the cause of it. So what came first the vgkc antibody or the cidp??? one will never know…. doesnt really matter…what matters is that somewhere along the way there was “a gliche” in the immune system and how to straighten it back out??
hopefully this helps—sometimes reading others experiences/similarities can help , sorry i dont have a lot of info for you, sounds like you have a lot going on–hope you get some answers soon