Anyone ever heard of HNPP?

[admin]

Has anyone out there every heard of Hereditary Neuropathy with Liability to Pressure Palsies (HNPP)? My son suffered a BPI that ended up needing surgery to remove scar tissue. A year later he started having trouble with the other arm. We couldn't pinpoint a specific injury (for either arm) and he had little pain - just tingles & some shocking - then his biceps stopped working. Two years after all of this started a new neurologist testing him noticed slowing at the elbow & wrist on NCV/EMG and diagnosed HNPP. Turns out that some people have a genetic predisposition to BPI or other pressure palsies like Carpal Tunnel, etc. Needless to say, this has rocked our world. The literature that I have found says that it is most likely common just misdiagnosed because of the transient nature of the episodes. I wonder how many people who just wake up in the morning with Winging Scapula or Muscle paralysis/weakness have this predisposition? Just asking.

[jennyb]

I have heard of this-not by the name, but I've heard that some people are more susceptible to pressure palsies because of how they are built. Narrow channels for the nerves or a tendency to nerve inflammation, I don't know which way round it happens, possibly both. But I have read of people waking up with various palsies. The ones I've read about do often resolve in time, I hope your son's is one of those.
Jen NZ

[michelle h]

That's very interesting. My injury is pretty unique and i was told that i may have narrow passage ways which could have helped cause my injuries. i was injured during a c-section to deliver my daughter. it was my position that caused the injuries, but that is a rare cause... so they attributed it to my position as well as possible narrow passage ways. i'm doing quite well, no pain (unless i get real cold) and a little numbness, most strength is back. i hope that your soon gets better. thanks for the post. that's very interesting information. if you have any links to articles about that "predispostion" i'd be interested to read them.
michelle

[jennyb]

I'm assuming you've googled the term hnpp, here are a couple of good sites http://ghr.nlm.nih.gov/condition=heredi ... urepalsies
http://www.hnpp.org/
Hoping things are easing for both of you :0)
Jen NZ

[admin]

I have done so much reading on the internet about this in such a short period of time that I can't remember where I found everything. It will take me a little while to get the links together. I remember reading about one form of HNPP that only seems to affect the Brachial Plexus. I'll try to find it and send a link.