Guest guest Posted January 14, 2001 Report Share Posted January 14, 2001 In a message dated 1/14/01 5:59:44 PM Eastern Standard Time, lls@... writes: << In response to your question about heredity, males are not carriers, for any known type >> Lamar, I must have missed something, what does the above refer to? E Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2001 Report Share Posted January 14, 2001 Judy, Lamar here, I have occasional painful cramps that will draw a muscle up. They were bad in my legs after exertion, but as my CMT progressed they disappeared. My neurologist said that the reason was the nerve damage was now so extensive that the signals were no longer there. I now have them in my hands after long use in things such as painting, hammering, or driving. My fingers will draw up in what is known as a " trigger finger " . Manually pulling them out by stretching will usually stop it. I have had general anesthesia 8 times and have noticed a rapid progression of my CMT after each time. Many CMT'ers have reported this, and others have seen no change. On my last anesthesia, I did have more problems waking up and my oxygen level was lower than ideal for hours, but not at a dangerous point. CMTI has a good publication on this. Things to remember are: 1: Always let the anesthesiologist know you have CMT and make sure he knows what it is. 2. He should monitor both Carbon dioxide and Oxygen levels. 3. He should use as light a level of anesthesia and for as short a time as possible 4. He should be cautious about the use of muscle relaxants because they tend to have a more intense and longer reaction with individuals with neuromuscular diseases. The one named SUXAMETHONIUM should be avoided as it can cause an increase in potassium ions leading to possible cardiac failure in a person with neuromuscular disease. (You can just say the muscle relaxant SUX, and he will know what it is) 5. Keep warm during and after anesthesia, as people with neuromuscular diseases tend to be more likely to develop a condition called " malignant hypothermia " where the body temp drops to a very low and potentially dangerous level. In response to your question about heredity, males are not carriers, for any known type, with the exception of some very rare types that are autosomally recessive. In those both the mother and father must carry the recessive gene to have a child with it. In X linked CMT a female can be a carrier, but a male can not be. The male either has CMT or does not. If the male has X linked CMT he will have carrier daughters but his sons will not have CMT/ In the most common heredity pattern in CMT (autosomally dominant), each child without regard to sex will have a 50% chance of having the gene--and again they will either have or not have CMT. It is very possible that some individuals have CMT and do not show symptoms. I have met people that had essentially no symptoms until in their 70's. I showed almost none until I was in my mid 40's. If your brother has children with the same type of CMT that you have, he would have to have an almost 100% probability of having CMT, but may show virtually no symptoms at this point in life. The same thing happened in my family. A great grandparent passed CMT on. Two daughters had it and passed it on. One son did not show symptoms, BUT he died in an accident in his 40's, and he had children and grandchildren with CTM. Therefore he would have HAD to have CMT, and likely would have shown symptoms if he had lived longer. As to your brother, most prostrate surgery can be done with spinal anesthesia which some consider to be a safer alternative if he has CMT. I am currently working on a web page that will show diagrams of the various heredity patterns found in CMT and hopefully it will be easier to visualize. It is somewhat difficult to explain or understand without a diagram. When completed, I hope that it will help you and others. ----- Original Message ----- From: john dawson egroups Sent: Sunday, January 14, 2001 12:13 PM Subject: [] misc Gretchen, I think it was you talking about your body " locking " up. When I sleep my arm is under my pillow. When I awake I must pick up my arm with the opposite hand. The part that hurts and can't move is the upper arm between shoulder and elbow. Is this what you meant by locking up? Anesthetic...What is the problem here? I once had thyroid surgery and spent an extra four hours in recovery unable to be awakened. When I did wake up it felt like the elephants had just left my chest.. I'm concerned as my brother(skinny legs) but no other major problems is having surgery. He had seeds implanted for cancer of the prostate and they failed. Now he is facing major surgery. His son is the one of my family that has the CMT symptoms . If my brother doesn't have CMT, is he a carrier being his son has it? Would a carrier be in just as much jeopardy. I haven't received my packets yet from CMTI and CMTA that's why I'm asking the experts. I had mentioned that the past years progression of symptoms is what made me look again for answers. Since my bx in December my symptoms have really progressed. My right leg has been most affected. Now my left feels very weak at the ankle. the right side of my torso(back) feels like it freezes up upon rising from a sitting position,(need to sit and try again) face and neck twitches, swallowing has been a problem for awhile. Vision has gotten way worse.Hands aren't affected but finger dexterity is awful. Is it possible for these things to go into remission or slow down or do I need to start drawing up plans for my ranch house with wide hallways quick? I know everyone is different but what's the general consensus on this? I wonder too how the fatigue factor enters into this. Surgery, bad chemical burn on my leg from something sprayed on during surgery, Holidays, back to work, admittedly I'm tired. Also have a husband who had a brain injury and when things get stressful his Obsessive compulsive behaviors get worse. To add to the stress. Before Christmas he had shopping money on him. He went to a diner for lunch-long story short-he paid a waitress's electric bill $380. It was to be turned off the next day. Fortunately he went to the electric co. and paid it but it sure wasn't in my budget. Sorry this is so long, but just needing some answers. Judi eGroups Sponsor Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2001 Report Share Posted January 15, 2001 , It was in response to the question Judi asked and was on the bottom of my post, which was: " I'm concerned as my brother(skinny legs) but no other major problems is having surgery. He had seeds implanted for cancer of the prostate and they failed. Now he is facing major surgery. His son is the one of my family that has the CMT symptoms . If my brother doesn't have CMT, is he a carrier being his son has it? Would a carrier be in just as much jeopardy. " From: jege6666@... egroups Sent: Sunday, January 14, 2001 07:28 PM Subject: Re: [] misc In a message dated 1/14/01 5:59:44 PM Eastern Standard Time, lls@... writes: << In response to your question about heredity, males are not carriers, for any known type >> Lamar, I must have missed something, what does the above refer to? E eGroups Sponsor Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2001 Report Share Posted January 15, 2001 In a message dated 1/14/2001 7:33:30 PM Eastern Standard Time, egroups writes: << 5. Keep warm during and after anesthesia, as people with neuromuscular diseases tend to be more likely to develop a condition called " malignant hypothermia " where the body temp drops to a very low and potentially dangerous level. >> I wanted to tell you guys that this almost happened to me. After one of my surgeries, the nurses were trying to wake me up and I kept trying to ignore them because I thought I was really warm (asleep) and waking up felt really cold. In reality, my body temperature was dropping rapidly. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2001 Report Share Posted January 19, 2001 " Body Locking up " It's nice to know someone else has the same problems at night! I usually wake up in pain form either one arm or the other. It has gotton a lot worse in the last five years. Getting Old?!? Jane ----- Original Message ----- From: john dawson Sent: Sunday, January 14, 2001 11:16 AM egroups Subject: [] misc Gretchen, I think it was you talking about your body " locking " up. When I sleep my arm is under my pillow. When I awake I must pick up my arm with the opposite hand. The part that hurts and can't move is the upper arm between shoulder and elbow. Is this what you meant by locking up? Anesthetic...What is the problem here? I once had thyroid surgery and spent an extra four hours in recovery unable to be awakened. When I did wake up it felt like the elephants had just left my chest.. I'm concerned as my brother(skinny legs) but no other major problems is having surgery. He had seeds implanted for cancer of the prostate and they failed. Now he is facing major surgery. His son is the one of my family that has the CMT symptoms . If my brother doesn't have CMT, is he a carrier being his son has it? Would a carrier be in just as much jeopardy. I haven't received my packets yet from CMTI and CMTA that's why I'm asking the experts. I had mentioned that the past years progression of symptoms is what made me look again for answers. Since my bx in December my symptoms have really progressed. My right leg has been most affected. Now my left feels very weak at the ankle. the right side of my torso(back) feels like it freezes up upon rising from a sitting position,(need to sit and try again) face and neck twitches, swallowing has been a problem for awhile. Vision has gotten way worse.Hands aren't affected but finger dexterity is awful. Is it possible for these things to go into remission or slow down or do I need to start drawing up plans for my ranch house with wide hallways quick? I know everyone is different but what's the general consensus on this? I wonder too how the fatigue factor enters into this. Surgery, bad chemical burn on my leg from something sprayed on during surgery, Holidays, back to work, admittedly I'm tired. Also have a husband who had a brain injury and when things get stressful his Obsessive compulsive behaviors get worse. To add to the stress. Before Christmas he had shopping money on him. He went to a diner for lunch-long story short-he paid a waitress's electric bill $380. It was to be turned off the next day. Fortunately he went to the electric co. and paid it but it sure wasn't in my budget. Sorry this is so long, but just needing some answers. Judi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2003 Report Share Posted July 12, 2003 wHEN i SIGNED UP I only wanted the daily digest-- I rechecked and that is what I am supposed to get-- instead I am getting a dozen or so at at time-- is that the daily digest? Quote Link to comment Share on other sites More sharing options...
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