Paraneoplastic Diseases

I haven’t heard that term before, but I think I’ve had all those blood tests. Did your doctor say exactly which tests? Between my neurologist, rheumatologist, endocrinologist, dermatologist and gastroenterologist, I think they have covered all the tests that would indicate a problem….colonoscopy to rule out tumors, brain MRI, etc. Insurance covered them. The only other tests I haven’t had are spine scans and biopsies. My understanding is that we were trying to rule things out.

Hello @ersingh, I wasn't familiar with the condition either but did a search of Connect and found quite a few members who have mentioned it. You might want to scan through their comments and read what they have shared. Here's a link that lists the comments - https://connect.mayoclinic.org/search/comments/?search=%20paraneoplastic%20diseases.

Mayo Clinic has some information that might help explain better here:
-- Paraneoplastic syndromes of the nervous system: https://www.mayoclinic.org/diseases-conditions/paraneoplastic-syndromes/symptoms-causes/syc-20355687

@ersingh the doctors think I had paraneoplastic syndrome as an autoimmune reaction to my breast cancer. It preceded diagnosis of cancer and my tumor was gone two months when I got actually tested, so too late. Main symptom was extreme nystagmus.

I am ten years out from cancer but reexperiencing quite a lot of nystagmus (along with increased nerve pain in face, with numbness, going into neck and down) and last week had the full paraneoplastic panel of blood tests. I am mainly interested in anti-Ri and anti-Yo which are related to breast cancer.

Thanks for responding. The tests are done as a special test done from lumbar puncture. I am not worried about the lumbar puncture. Have just had so many tests done and an answer isn't yet found but I am not well. Just frustrating and hoping we are on the right path to a diagnosis.

Thank you! I didn't know you could search for comments by topic. Will have to learn how to do this.

I hope your test results are okay and that you are doing well. It is frustrating to hear that the nystagmus doesn't get better. The new eye movement problems are harder for me to figure out how to work around than mobility issues are. Any suggestions/hacks on how to stay productive at work with nystagmus and double vision? I have made the text on my screen enormous, adjusted the brightness and color of the monitor, and am starting to use a voice to text typing app, but don't know more than that. Any suggestions for this or driving? I am starting to give up driving at night which is very limiting with high school kids.

Hi, I did have a workup for paraneoplastic disease after being diagnosed with sensory ganglionopathy. It was expensive 8 years ago. My test came back definitively negative.
With this test and my lab results my diagnosis was idiopathic so they really do not know the cause other than it was not cancer related.
Prayers for a good outcome.

@ersingh I just had a blood test. What test uses a lumbar puncture?

My nystagmus got better after the tumor was removed. Ten years ago. I have had some recently but only quite recently.

I have trouble driving at night but only because of cataracts!

The paraneoplastic panel can be run on blood and CSF from the lumbar puncture. My understanding is that the blood tests can sometimes come back negative but the same antibody testing on the spinal fluid can be positive, and vice versa.

That's rough. Sorry you are going through this.. Get well very soon.