Originally Posted by Pyr2

Hi everyone, I have been living a nerve nightmare for three years and have posted before on this long journey. I definitely have a systemic condition- dr says I have problems in all three nervous systems- and it wasn't until just now that the PN really showed its face but Ive never heard of a PN type being "mixed" with both axonal and demyelinating features. Here it is-

"Distal axonal and demyelinating neuropathy of multifocal pattern. Consistent with cranial neuropathy, and sensory neuronopathy, autonomic neuropathy and underlying postinfectious dysimmune process or connective tissue disease related to lupus, Ehler Danlos, or a neurologic metabolic disturbance."

My symptoms are burning and stinging pains and buzzing all over. No real numbness or tingling. I feel like I am one raw nerve from head to toe and any activity sends me into stinging spasms and stiffness everywhere. Up until 2 months ago I was able to workout now after I feel like a fibromyalgia fest with muscle pain to the touch all over. My absolute WORST symptoms are cranial - my forehead and eyes burn and sting and I even have nystagmus. I also have neuropsychiatric symptoms. Something got to me really good. Ive had a polyclonal IgM in my blood for 18 years at least and all that time I would get the same response "oh thats so nonspecific - means you have an infection or inflammation reaction" and no doctor would treat it or find out what was behind it. Nonspecific - NOT! I also had years of a low postive Ana, anticardiolipin antibodies, and have had Lyme exposure by specific bands. This dr says those features in and of themselves should have prompted immune treatment by someone. Now its systemic.

I have also tested positive by immunofluorescene for neuronal antibodies, yet when they do the western blot, I am not confirmed for each particular antibody. Which is why he wants to do lumbar for autoimmune enchephalitis and paraneoplastic. CT scans were done and no cancer found - PET may be next. Something is definitely wrong CNS related. Its not just the PN. I can feel something is wrong with my brain. Things just got worse after a flu and pneumonavax which I knew better not to take. With an overactive immune system I just cannot take anything else into my system. My head/brain literally feels on fire and infected and I feel like Im about to lose consciousness, getting more and more lethargic by the day. I feel like something is really wrong upstairs.

Doing repeat MRI, SPECT and lumbar puncture in next two weeks. After seeing about 9 different neuros who kept shrugging shoulders for three years I went to dr in NYC at a teaching hospital who was so proactive that after consult he did emg on me right then and there and wanted me to get the mri and spect done at hospital that same day. He says he doesn't like waiting and believes in moving on things right away. I thought I died and went to patient heaven. Unfortunately the hosp imaging dept didn't take my insurance so I have to wait and go elsewhere. I am just thrilled b/c FINALLY I qualify for ivig or plasma or something to take this gosh awful pain away and that finally I am being believed after being prescribed 14 different psych drugs in the past 3 years...... Im just surprised SFN biopsy was negative with all the burning but he is going to repeat. Just scared about the CNS stuff. Can't play around with that. This all started with seizures, bad headaches, cranial nerve issues and muscle twitching all over and involuntary facial movements and some hand movements.

Thanks for listening. HOnestly, I just needed to vent. And Im nervous b/c - why did he get it and they didnt? Should I doubt him? I mean this is still in progress- but thats where he is leaning. He is head of neuro Lyme at teaching hospital I would imagine he knows it when he sees it. I feel I was too complicated for the local neuros. Would love to hear from anyone with something similar - systemic, infectious or autoimmune with possible CNS involvement.
L