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Old 11-02-2006, 08:42 AM
euphoniaa euphoniaa is offline
Distinguished Community Member
Join Date: Oct 2006
Location: dx with MS & HNPP 7/03
Posts: 244
Default When genes collide!

Wow! Lots in information on this thread. Although I've been dx'd with HNPP, it has sure been difficult to come up with comprehensive, current stuff about it. I'm going to go print up the links and read them more when I have time.

Some of you know my history, but for anyone else, I have a cousin with MS (and carpal tunnel), I recently found out another cousin has HNPP, my dad has HNPP confirmed by genetic testing, and I have a dx of both MS and HNPP.

I'd doubt my MS dx after reading all this HNPP info, but my last neuro told me that I have one of the most definite cases of MS she's seen. I have a brainful of "classic" MS lesions, with ones also noted on the brainstem, spinal cord, and optic nerve. I have oligoclonal bands in the spinal fluid, and abnormal evoked potentials. I have MS.

However, my EMGs also show carpal tunnel in both wrists and both elbows (HNPP). I've always told people that HNPP is like MS without the brain damage, but I recently found out that researchers are also finding CNS lesions in HNPP patients.

Although I've already figured out that almost all of my MS symptoms could also be attributed to HNPP (and age... ), the most interesting thing about this thread is realizing that all my MS-type exacerbations could be from HNPP also.

Years ago I had a nasty sciatic nerve experience that sent me to the emergency room, a week-long episode of vertigo, and a week where I woke up with a loud, scary, roaring in my ears that has dwindled down to a constant tinnitus. MS or HNPP, I wonder?

My ankle (joint only) swells up for no reason and my knee swells up from an old high school injury where I dislocated my knee and chipped the bone.

I found the migraine thing interesting because I get what I call 3-day sinus headaches. I've had one since last Saturday. But this one finally culminated on Tuesday into a one-sided killer headache from my eyebrow, across my head, and down my neck to my left shoulder. Yikes! I also get an occasional ice pick in the side of the head.

About foot drop, which my dad and I have -- my dad has a stiff AFO that causes him pain, so I'm going to try what a lot of MS patients use -- the Foot Flexr. I just keep forgetting to order a set. I figure I can split the pair up and give one to my dad. It's an elastic band that hooks to your shoe and flexes your toe upwards.

Sorry for the length of the post. I wish you all get answers and find some relief. Keep writing, though. This is interesting.

P.S. My most recent HNPP experience was after buying my first cell phone. After my first 20-minute conversation, my last 2 fingers went numb, along with my entire arm up to the elbow. It took a couple of weeks for the numbness to gradually go away. That is NOT MS -- it's HNPP.
DX with both MS and HNPP (a hereditary peripheral neuropathy) in July of '03, but had probably had MS for at least 30 yrs before that. I've never taken any prescription meds for either MS or MS symptoms (tried LDN for awhile).
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