I’m writing to see if anyone else is going through this and to find resources and support. I haven’t been diagnosed yet but its suspected that I have Neurological Paraneoplastic Syndrome due in part to my being a breast and melanoma survivor.
Three months ago my symptoms started. I began to lose my night vision and it seemed to come on all of a sudden. I have since been told I have 1 nevus and an ERG showed three more ‘dots’ on my right eye as well. I have also been told that my optic nerve is pale. It is now affecting my speech, motor skills, and brain function. I can’t sleep, even on the meds they gave me 🙁
Mass Eye and Ear doctors have basically ruled out all other diseases and now we are just waiting for my blood test results to come back. The problem with that is that I have to wait 2 months before I get my results because this is so rare that only a couple labs test for it in the USA. My vision, memory, speech, and now my swallowing have all been affected. I’m scared and to be quite frank I feel myself dying.