Guest guest Posted March 8, 2001 Report Share Posted March 8, 2001 Becky, Lamar here, That is correct. The symptoms of HNPP can improve with proper treatment. About the only thing that I can think of that CMT has similar is that carpal tunnel. Sometimes it can be helped. At the same time the HNPP is still there just as our CMT is still there. ----- Original Message ----- From: Maxwell Sent: Wednesday, March 07, 2001 05:01 PM Subject: [] HNPP/CMT ? I am still confused over these two. And now the most confusing thing is what I copied and placed below. I have never heard of any person with CMT having a full recovery, have any of you? What we have with CMT, we have it for good, when it hits it stays. In HNPP, according to this, people with it recover and if they are careful to not cause compression of nerves as in crossing legs, leaning on elbows, they won't have the pressure palsies at all. You'd have to read the whole site to understand it all, then hope your luckier then I was in understanding it! LOL~>Becky M. http://www.geneclinics.org/profiles/hnpp/details.html Author: D Bird, MD; University of Washington Last revision: 15 June 2000 Summary Disease characteristics. HNPP is a disorder of peripheral nerves in which individuals are predisposed to repeated pressure neuropathies such as carpal tunnel syndrome and peroneal palsy with foot drop. Recovery from acute neuropathy is often complete; when recovery is not complete, the resulting disability is usually mild. Some affected persons also have signs of a mild to moderate peripheral neuropathy. Management No specific treatment for the underlying genetic or biochemical defect exists and no special diet or vitamin regimen is known to alter the natural course of HNPP. Risk factors for pressure palsies, and thus activities to avoid, include prolonged sitting with legs crossed, occupations requiring repetitive movements of the wrist, prolonged leaning on elbows, and rapid weight loss [Cruz-ez et al 1997, 2000]. Many patients have slow but complete recovery from the acute neuropathy episode. Those with incomplete recovery usually retain good function for activities of daily living. Transient bracing, such as with a wrist splint or ankle-foot-orthosis (AFO), may be useful. Some persons with residual foot drop may permanently use an AFO. Controversy exists as to whether surgical decompression of nerves is of benefit. Because spontaneous recovery is common and because no systematic-controlled study of surgical intervention has been done, this decision must be made on an individual basis, taking into consideration knowledge of the natural history of the disease. There is a developing consensus that surgical repair of carpel tunnel syndrome in these patients is of little benefit and transposition of the ulnar nerve at the elbow may actually produce poor results. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2001 Report Share Posted March 8, 2001 Hi Becky, You are not the only confused one here. Even some of the neuro-docs have blinders on - then again, we are gaining knowledge of CMT disorders at an increasing rate lately. I have HNPP as clearly demonstrated by blood DNA test at Athena Labs. I also have foot deformities, various atrophied muscles, and pain typical of many CMT1A people. I even have swallowing and breathing problems which are increasingly being appreciated as associated with CMT deterioration. Yes, I have pressure palsies as well and they do go away, but, they are also more susceptible than " normal " people. In addition, I have numbness to pain in the periphial areas, balance problems, and inability to know where my feet are unless I'm looking at them. So, my conclusion is that the notion HNPP is limited to episodes of pressure palsies is no longer valid and certainly not up to date. Read the Quest article in the current issue. It does bring one up to date on what HNPP is - which is just another genetic mutation in the same area that produces CMT or any other generalized term that describes nerve deterioration caused by genetic deviations primarily noticed by periphial effects on nerves and muscle atrophy. We don't know all of the phenotype yet for CMT, but many of us now believe that further study is indicating effects in some of the semi-autonomus muscles such as swallowing and diaphragm. - EdM -----Original Message----- From: Maxwell <rmax@...> < > Date: Wednesday, March 07, 2001 6:01 PM Subject: [] HNPP/CMT ? > I am still confused over these two. And now the most confusing thing is what I copied and placed below. I have never heard of any person with CMT having a full recovery, have any of you? What we have with CMT, we have it for good, when it hits it stays. In HNPP, according to this, people with it recover and if they are careful to not cause compression of nerves as in crossing legs, leaning on elbows, they won't have the pressure palsies at all. You'd have to read the whole site to understand it all, then hope your luckier then I was in understanding it! LOL~>Becky M. > > >http://www.geneclinics.org/profiles/hnpp/details.html > > Author: D Bird, MD; University of Washington > >Last revision: 15 June 2000 >Summary >Disease characteristics. HNPP is a disorder of peripheral nerves in which individuals are predisposed to repeated pressure neuropathies such as carpal tunnel syndrome and peroneal palsy with foot drop. Recovery from acute neuropathy is often complete; when recovery is not complete, the resulting disability is usually mild. Some affected persons also have signs of a mild to moderate peripheral neuropathy. > > > Management >No specific treatment for the underlying genetic or biochemical defect exists and no special diet or vitamin regimen is known to alter the natural course of HNPP. Risk factors for pressure palsies, and thus activities to avoid, include prolonged sitting with legs crossed, occupations requiring repetitive movements of the wrist, prolonged leaning on elbows, and rapid weight loss [Cruz-ez et al 1997, 2000]. > >Many patients have slow but complete recovery from the acute neuropathy episode. Those with incomplete recovery usually retain good function for activities of daily living. Transient bracing, such as with a wrist splint or ankle-foot-orthosis (AFO), may be useful. Some persons with residual foot drop may permanently use an AFO. Controversy exists as to whether surgical decompression of nerves is of benefit. Because spontaneous recovery is common and because no systematic-controlled study of surgical intervention has been done, this decision must be made on an individual basis, taking into consideration knowledge of the natural history of the disease. There is a developing consensus that surgical repair of carpel tunnel syndrome in these patients is of little benefit and transposition of the ulnar nerve at the elbow may actually produce poor results. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2001 Report Share Posted March 8, 2001 CMT Group: D Bird, that's one of the doctors my mom and I saw at the University of Washington. We offered ourselves to help in any studies of his, he gave us pamphlet/survery. That was it. Just thought you might like to know. -Marta Author: D Bird, MD; University of Washington > > > >Last revision: 15 June 2000 > >Summary > >Disease characteristics. HNPP is a disorder of peripheral nerves in which > individuals are predisposed to repeated pressure neuropathies such as carpal > tunnel syndrome and peroneal palsy with foot drop. Recovery from acute > neuropathy is often complete; when recovery is not complete, the resulting > disability is usually mild. Some affected persons also have signs of a mild > to moderate peripheral neuropathy. > > > > > > Management > >No specific treatment for the underlying genetic or biochemical defect > exists and no special diet or vitamin regimen is known to alter the natural > course of HNPP. Risk factors for pressure palsies, and thus activities to > avoid, include prolonged sitting with legs crossed, occupations requiring > repetitive movements of the wrist, prolonged leaning on elbows, and rapid > weight loss [Cruz-ez et al 1997, 2000]. > > > >Many patients have slow but complete recovery from the acute neuropathy > episode. Those with incomplete recovery usually retain good function for > activities of daily living. Transient bracing, such as with a wrist splint > or ankle-foot-orthosis (AFO), may be useful. Some persons with residual foot > drop may permanently use an AFO. Controversy exists as to whether surgical > decompression of nerves is of benefit. Because spontaneous recovery is > common and because no systematic-controlled study of surgical intervention > has been done, this decision must be made on an individual basis, taking > into consideration knowledge of the natural history of the disease. There is > a developing consensus that surgical repair of carpel tunnel syndrome in > these patients is of little benefit and transposition of the ulnar nerve at > the elbow may actually produce poor results. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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