BrainTalk Communities 10/2006-8/2011 Archives

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-   -   HNPP information anybody? (

euphoniaa 11-02-2006 08:42 AM

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.

hmm_md 11-03-2006 05:53 PM

when genes collide
Susan, thanks for the extra information. I have to say that I am really excited to see some similarities in others. Interesting that you mention MS being spoken of as HNPP without brain damage. Myself, my sister and my aunt have been told at various times that MS is at the top of the differential and that it would probably declare itself eventually. I keep waiting for the other shoe to drop but it never does. My aunt had the oligoclonal bands in the CSF. None of us has had any demyelenating plaques. I think I'm mostly relieved that HNPP provides an excellent explanation and that we don't have to wait for an eventual, definitive dx of MS.

I also had to laugh when you described getting your cell phone. The same thing happened to me! I hate that you have to keep your elbow bent so far. With a regular phone you can give your elbow a break with your shoulder. I can only go a few minutes without switching hands before my arm goes numb from the elbow down to those lateral fingers. I'm always making excuses to get off my cell phone.

My ankle swells a lot too, but I guess it is what I should expect after so many injuries. I really think my prediliction for numbness is a liability when it comes to my loose jointed tendancy to injure myself.

LizaJane: I remember terrible "growing pains" from childhood and my children have all experienced it as well. My son to the extent that I had him xrayed -- normal of course. My sister has slight scoliosis. My other sister's first 2 children had mild hip displasia. No ADD that I know of <knock on wood>.

Maybe we can form our own rare disease entity..... hmmmmmm.


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