I'm still not sure if there's any sort of connection between MS & HNPP, although my family's situation raises intriguing questions.
But...I have a few more comments to the most recent posts in this thread. Gainsbourg, I don't think HNPP is a "form
of CIDP" although they both seem to be neuropathies of the peripheral nerves. HNPP means that MY peripheral nerves are unable to handle physical stress to them due to a missing myelin gene. Some other "named" peripheral neuropathies, such as CIDP, sound more like inflammation caused by other reasons, such as viruses, etc.
Also, just for the sake of background information in this discussion, I should have mentioned that the myelin in the CNS (brain & spinal cord) is made up of oligodendrocytes
, whereas the myelin covering of the peripheral nerves (all other nerves in the body) is from Schwann cells
So, my LP shows that I have both O-bands in my spinal fluid (plus whatever else they look for) and the extensive round of EMGs they gave me (I call it The Day of the Long Needles
) show I have carpal tunnel in both wrists & both elbows (at least). That's what puts the PP (Pressure Palsies) into HNPP. (I also have a brain that's Chock Full O' MS-specific Lesions, but who's counting at this point?)
My cousin with MS has had 2 unsuccessful carpal tunnel surgeries (possible HNPP), although my dad had a recent MRI of his brain showing only that he had, well, a "normal" 87-year-old brain. My dad, cousin, and I have footdrop, but my neuros shrug that there's no way to figure out whether my footdrop & hand tremors are due to MS or HNPP or both.
Also, FYI - both the "named" PNs like CIDP & HNPP and also the generic, unnamed PN condition can show remarkably similar symptoms to MS. Just check out the generic PN pages at Mayo: http://www.mayoclinic.com/health/periph ... hy/DS00131
The term "peripheral neuropathy" in general just refers to a group of symptoms within the PNS, which includes the sensory nerves, muscles, and organs, affecting things like bowel & bladder issues as well. PN can be the result of genetics (me), diseases (maybe Tara), vitamin deficiencies, etc., which is why I always feel obligated to remind undx'd sufferers (who don't test as well as I do
) of the possibilities.
Another note: HNPP is a malfunction of the same gene (missing part) as CMT, Charcot-Marie-Tooth (doubled gene), a much more common hereditary neuropathy. They're often mentioned together when you do research.
Tara, I DO hope that they've found the answer for you and that your CIDP responds to treatment! Sorry to take so much of your thread, but some points needed a bit of clarification.
And forum readers, that's your lesson for the day.
(Anyone - please feel free to correct my info if it's wrong.) Sorry to bore you all, but I hope some of this info helps those stuck with typical MS-like symptoms but without typical test results. Good health to all!