Ginger- I noticed that in the past month or so you have gone down this path. I am not certain of the outcome but looks like you are on IVIG after some positive autobody tests? Anciendaze you seemed to have some good knowledge about paraneoplastic
I have had a complex neuro history. I was tested on the Mayo paraneoplastic panel in Nov and was negative. Since that time and declining function, my neuro redid some of the tests and I came back "FLOURESENCE NOTED" to onconeural antibodies Anti Ri, Anti Yo and Anti Hu. However, these were not confirmed on western blot.
To make matters worse, in the course of a spinal MRI a few weeks back, they picked up on a pelvic mass. A pelvic MRI was done after and they cannot tell whether the ovarian cyst is benign or cancerous. So of course, I am now convinced it is indeed cancerous after my reaction to this onconeural antibodies.
Does anyone know WHAT ELSE can cross reactive with these tests or what can cause flouresence but ultimately a negative western blot? I have to say I feel TERRIBLE, worse than I ever have. I burn if you press on me, I am exhausted, have no appetite, headaches, cranial issues, and feel like Im dying inside. Cognitively declining too. They are also doing a lumbar puncture suspecting possible encephalitis. This is all turning too slow for me. I just want a PET scan to give me some peace of mind and this cyst out of me.
I have an oncologist appt this week and another next week. 2.5 years of this. I can't believe I didn't push for a full body scan earlier.
I do have anticardiolipin antibodies and a low positive ANA (and low serum complements c3 and c4). I am wondering if any of that could cross react with the IFA panel. Although if there is no tumor, how do we take care of the neuro symptoms? Im so scared and confused.....
L
I have had a complex neuro history. I was tested on the Mayo paraneoplastic panel in Nov and was negative. Since that time and declining function, my neuro redid some of the tests and I came back "FLOURESENCE NOTED" to onconeural antibodies Anti Ri, Anti Yo and Anti Hu. However, these were not confirmed on western blot.
To make matters worse, in the course of a spinal MRI a few weeks back, they picked up on a pelvic mass. A pelvic MRI was done after and they cannot tell whether the ovarian cyst is benign or cancerous. So of course, I am now convinced it is indeed cancerous after my reaction to this onconeural antibodies.
Does anyone know WHAT ELSE can cross reactive with these tests or what can cause flouresence but ultimately a negative western blot? I have to say I feel TERRIBLE, worse than I ever have. I burn if you press on me, I am exhausted, have no appetite, headaches, cranial issues, and feel like Im dying inside. Cognitively declining too. They are also doing a lumbar puncture suspecting possible encephalitis. This is all turning too slow for me. I just want a PET scan to give me some peace of mind and this cyst out of me.
I have an oncologist appt this week and another next week. 2.5 years of this. I can't believe I didn't push for a full body scan earlier.
I do have anticardiolipin antibodies and a low positive ANA (and low serum complements c3 and c4). I am wondering if any of that could cross react with the IFA panel. Although if there is no tumor, how do we take care of the neuro symptoms? Im so scared and confused.....
L