Hi everyone, I have posted here before.

About two years ago I started to have malfunctions with my ANS. I had mini seizures with autonomic features and slowly other weird things with sleep, burning eyes, etc. Also lot of twitching, burning, nerves/muscles, etc.

I had two EMGS last year all neg. I had a lumbar puncture which was normal too. Eventually, diagnosed with Lyme and reactivated EBV.

This last two months are really ramping up in terms of dysfunction. In the last two months my calf has atrophied by three inches. Im just not feeling well. Mentally, too.

Ive been to a million drs. YEsterdays neuro scared the pants off me. He was very relaxed and thorough and concerned. He has a lot of experience. He said im in that 5% of cases that has no clear answer but something definitely WRONG. He is doing emg and nerve biopsy next week. He said its time to look for CANCER.

So I had all the blood tests and they wont come back until three weeks. In the meantime, I call my oncologist and tell him this (long story, I have never had cancer but for some health reasons years ago he did a bone marrow biopsy- which showed clean marrow but a deletion on cytogenetics showing some cancer deletions in a few cells they could not explain).

The onco is REFUSING to do another bone marrow or PET scan even thought that could put this to rest. I am having him call my neuro. Maybe the neuro can explain his reasoning for why he suspects cancer. But the oncologist's PA, said "he is confident" there is nothing there based on his exam of you and the tests he did.

What to do? This has been such a nightmare for me. A scan is so noninvasive. I feel like I am deteriorating by the day. Can a primary care dr order a PET scan? My husband says I should be pleased that the onc is so confident that he doesnt want to do further testing. However, I have that bone marrow deletion that can't be explained! I feel like that is enough to get this scan! I want to close the loop on this, what do I do?

I know its off the beaten path question, Im terrified. What could be systemically inflaming all my nervous systems? I have had pain in every distribution too - cranial, radiculopathy, etc. I had Lyme in the past but its not active now. Im so scared and everything is moving too slow. I hate nerve issues. Every other system is so straightforward and this is not. Ive been in this diagnostic nightmare for two years and now Im afraid I have advanced cancer that is causing this.

Get a copy of all your records (if you don't already have them) especially the bone marrow biopsy and get a second opinion with new hematologist/oncologist. If your blood counts (red cells, white cells and platelets) are normal, they usually won't do another bone marrow biopsy. What prompted them to do one in the first place? They must have been looking to rule out something.

Paraneoplasia is not really common. But when it occurs it is dramatic and painful and fast moving.

I can understand your fears very well. But the stats are on your side.