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Postby euphoniaa » Mon Aug 03, 2009 6:03 am

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 instead.

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. :D (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! :)
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby tara97 » Mon Aug 03, 2009 9:29 pm

I think that its great that all this is being dicussed. I wish I had picked a more revealing title so that others in the future could read this and explore other possiblilities for their undiagnosed symptoms.
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Postby jimmylegs » Tue Aug 04, 2009 6:58 am

u can edit the title, just go to the very first post and change the subject line.
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Postby Mike56 » Tue Aug 04, 2009 10:25 am

Would you expect to find any brain lesions with CIPD or HNPP? Sorry if this has been answered, I read through ths post twice and am having trouble understanding it today. Not thinking straight. Can't even seem to dial the phone correctly.... anyway thanks.
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Postby tara97 » Tue Aug 04, 2009 7:26 pm

I dont think so but I had a lession at c-5 and c-6 levels. it said consistant with the demylination process as seen with MS and TM. it did not contrast however. but they still could not move away from the possibility of MS. its funny cuz that was 5 years ago. my most recent brain MRI shows no evidence of the lession or the syrinx that was also found. My doctor said hmmm to that. I do think it is possible for it to effect the spinal cord. I dont know about the brain.
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Postby euphoniaa » Wed Aug 05, 2009 4:51 pm

Mike56 wrote:Would you expect to find any brain lesions with CIPD or HNPP? Sorry if this has been answered, I read through ths post twice and am having trouble understanding it today. Not thinking straight. Can't even seem to dial the phone correctly.... anyway thanks.


Hi Mike, I haven't done much research about CIDP, but HNPP should affect only the myelin in the peripheral nerves and not the brain & spinal cord (CNS). I have run across a handful of research articles over the years about the possibility of HNPP causing white matter lesions, but it's seldom mentioned at HNPP info sites.

The main thing to remember for those who don't show the usual telltale MS signs during testing (brain/spine lesions on MRI, O-bands...) is that disease, damage, and inflammation in any of the rest of the nerves in the body (the PN) can mimic many of the symptoms that MS gives you.

I hope this helps explain it. Good luck!

(See below)

Peripheral Neuropathy Symptoms (from Mayo Clinic)

Your nervous system is divided into two broad categories. Your central nervous system consists of your brain and spinal cord. All the other nerves in your body are part of your peripheral nervous system, which includes:

■Sensory nerves to receive feelings such as heat, pain or touch
■Motor nerves that control how your muscles move
■Autonomic nerves that control such automatic functions as blood pressure, heart rate, digestion and bladder function

Most commonly, peripheral neuropathy begins in the longest nerves — the ones that reach to your toes. Specific symptoms vary, depending on which types of nerves are affected. Signs and symptoms may include:

■Gradual onset of numbness and tingling in your feet or hands, which may spread upwards into your legs and arms
■Burning pain
■Sharp, jabbing or electric-like pain
■Extreme sensitivity to touch, even light touch
■Lack of coordination
■Muscle weakness or paralysis if motor nerves are affected
■Bowel or bladder problems if autonomic nerves are affected
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby Mike56 » Tue Aug 11, 2009 11:03 am

Tara, I too say Hmmmmm. Thanks for the response.

Euphoniaa, thanks so much for the info. I'm as yet not dx'ed, so still looking for possabilities. I do have at least one large brain lesion, and have been told I've got a demyelinating, MS type of disease, so I think I can rule out HNPP.
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