Guest guest Posted March 4, 2007 Report Share Posted March 4, 2007 Pam, that is a real bummer. Our bodies are wondrous in so many ways, but they can sure develop some spectacular disorders. I guess it's kind of like mechanical machinery; the more complex the machine, the more things that can go wrong. For about two years, I have talked about developing a site, or link, where we can post our stories, so that others, especially newcomers, can have a place to read them. Plus, then we wouldn't have to repeatedly retype them. We could just go in as needed to update them. However, I still haven't gotten that done! I will send my story in another email, as I need to update it. You can read it as you can, or want! Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Debbie T. RE: DisabilityDate: Sun, 04 Mar 2007 07:51:16 -0000 Ramblin Rose,I haven't had the time or the energy to put my hole story down yet but I will soon.HNPP is a genetic neurological disorder. I found out I have this disorder last summer and since found out my father is the carrier.HNPP is Hereditary Neurological (liabilities) to Pressure Palsies. I have to be carefull of all my neurological pressure points and avoid ANY pressure or I can have a palsy. For example when I first sought treatment my right arm/hand was numb and I was having muscle wasting (this lasted for more that a year). I was also having extreme pain (still am). I have 2 cervical herniations and did PT and traction which helped but continue to have weakness and numbness and pain. I have also had foot drop, but this one didn't last long. And I have peripheral neuropathies and am on Gabapentin. My EMG is very abnormal in all 4 extremities. With this disorder the nerves can heal but each time you injury the nerves (and this can be done as simply as crossing your legs or typing) you can cause permanet damage.I will be seeing my neurologist on the 6th and the breast surgen on the 14th and hopefully will learn more! Thank You, Pam Win a Zune™—make MSN® your homepage for your chance to win! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2007 Report Share Posted March 8, 2007 Rose, with the way our memory problems are, the sight sounds like something that could really be helpful...............Florida ConnieRose wrote: Pam, that is a real bummer. Our bodies are wondrous in so many ways, but they can sure develop some spectacular disorders. I guess it's kind of like mechanical machinery; the more complex the machine, the more things that can go wrong. For about two years, I have talked about developing a site, or link, where we can post our stories, so that others, especially newcomers, can have a place to read them. Plus, then we wouldn't have to repeatedly retype them. We could just go in as needed to update them. However, I still haven't gotten that done! I will send my story in another email, as I need to update it. You can read it as you can, or want! Ramblin' Rose Moderator From: "pammarkpie" <pmothershead (AT) verizon (DOT) net>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Debbie T. RE: DisabilityDate: Sun, 04 Mar 2007 07:51:16 -0000 Ramblin Rose,I haven't had the time or the energy to put my hole story down yet but I will soon.HNPP is a genetic neurological disorder. I found out I have this disorder last summer and since found out my father is the carrier.HNPP is Hereditary Neurological (liabilities) to Pressure Palsies. I have to be carefull of all my neurological pressure points and avoid ANY pressure or I can have a palsy. For example when I first sought treatment my right arm/hand was numb and I was having muscle wasting (this lasted for more that a year). I was also having extreme pain (still am). I have 2 cervical herniations and did PT and traction which helped but continue to have weakness and numbness and pain. I have also had foot drop, but this one didn't last long. And I have peripheral neuropathies and am on Gabapentin. My EMG is very abnormal in all 4 extremities. With this disorder the nerves can heal but each time you injury the nerves (and this can be done as simply as crossing your legs or typing) you can cause permanet damage.I will be seeing my neurologist on the 6th and the breast surgen on the 14th and hopefully will learn more! Thank You, Pam Win a Zune™—make MSN® your homepage for your chance to win! Food fight? Enjoy some healthy debatein the Yahoo! Answers Food Drink Q&A. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.