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Re: HNPP Diagnosis
Jan 5, 2004
[QUOTE=islandlady]I'm just curious, Navi. What are your symptoms? You say you've had it 58 yrs - has it gotten worse over the years? Is there any medication that helps?

This condition (PN) never ceases to amaze me - it comes in so many forms!
Thanks, and I hope you are doing well!
Islandlady[/QUOTE]

Thanks for the post IslandLady. For me, it's been a progressive issue beginning with drop foot (L) while in the submarine service. After many "falls" causing a collage of different injuries, 14 surgerys later, I can tell you the only meds I take are to control pain. HNPP is a unigue desease in that it memics CMT to a degree but isn't the same. The progression is based on the propencity to acquire pressure palsies that vary throughout my body. Unfortunately, most have not resolved with time and have permanantly disabled me, i.e., legs, arms.

I must be extremely careful creating what would be considered normal pressure on limbs and torso of my body for fear of creating yet another palsey. An example would be what normal people take for granted - leaning on one's elbow. For me, that can be locally catostrophic, causing pressure on the ulna nerve and affecting my hands (which is currently the case).

Had I known what the desease had in store for me when I was 18, I would have lived an entire different life style being careful not to subject my body to irreversable damage. The kicker has been that every surgery I've had has, by the process alone, caused another neuropathy or weakness associated with long term palsey and pain.

There are no meds for HNPP - there is no cure - there is only caution not to exaserbate what damage has already occured.

I hope I've answered your questions satisfactorly. I'm still searching for answers myself. What I've learned since the diagnosis just a week ago is all been through retrospect over my life time and what little "technical jargon" I've been able to gleen from the doc and the net.

Navi

PS Still looking for someone who has the same diagnosis - HNPP.





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