Again, feel so sorry for those of you with this skin hypersensitivity (allodynia) thing - yeah, I too wash my hair in the sink as the shower is still a no-no. Had found extremely lightweight microfiber bedsheets at Kohl's. Light as a feather, and might try plain high-count Egyptian cotton ones but not the cotton sateen - can't do those.

As to C-M-T disease, nobody has ever mentioned it as a diagnosis in my case, so assume it's not that. So many diagnostics were negative (spinal tap, paraneoplastic panel sent to Mayo, MRI w/contrast brain to rule out stroke or lacunes, etc., CT chest w/contrast to rule out small cell lung cancer) that I keep coming back to:

1. Whether or not repeat bloodwork still shows carnitine abnormality that would indicate a genetic defect affecting the mitochondria that could cause neuropathy. Whether or not there is a CoQ10 deficiency. My neuro should be calling about these soon.

2. Dorsal root ganglionitis.

3. My autonomic nervous system abnormalities (very hypersensitive to heat, don't feel cold much).

4. Etc.

Appointment with the neuro 8/31 was just rescheduled by the secretary because he'll be out of town. It's now 9/21.

Best wishes everybody,

Sheltiemom