Guest guest Posted August 5, 2001 Report Share Posted August 5, 2001 This is scary stuff. Although I believe being informed about CMT is important (especially knowledge of phrenic nerve involvement and appropriate treatment), I think it's important to keep in mind that death from CMT is indeed rare. I'm sure that current statistics on CMT deaths aren't accurate (per your example Lamar), but providing those might give some balance to these recent death posts. We are looking for hope, not another stressor. Nita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2001 Report Share Posted August 6, 2001 Becky, Lamar here, It is very true that CMT has been known to lead to death from phrenic nerve involvement. Though that happens it is in a minority of cases but very real. Death certificates list the immediate cause of death which is very frequently " heart failure " They usually have places for two additional things and would be worded like: Heart failure for 2 days as a result of Respiratory distress for months as a result of Diaphragmatic paralysis for years The last would be " as a result of CMT " but would not likely be mentioned. While this may seem inaccurate it is to determine what made the individual cease to be living and not everything that led to that point. Incidentally, AIDS reduces the bodies immunity. Diseases that a healthy body can resist become serious. The most common cause of death is a type of pneumonia. The HIV infection would be the last thing listed, if at all on most death certificates of people with HIV. There are usually only three things that cause imminent death. The brain, the heart, and the lungs. If any one of these fail completely the other two will follow shortly. There can be many things that lead to that failure. ----- Original Message ----- From: Maxwell Sent: Sunday, August 05, 2001 07:34 PM Subject: [] Sister died from CMT I will not identify this person without his consent. I have talked with him about the death of his sister. I want to make aware the fact CMT can cause death for those who do not think it can. February 05, 2001 at 15:47:14: I know some people will want to correct that by saying she dies of complications of CMT but I think that is a form of denial on their part. People die of cancer not complications of cancer. People die of AIDS not complications of AIDS. The point is the literature says that it doesn't shorten ones life span. I don't believe that for one moment. And the literature says nothing about it being fatal. I think that is being less than honest. I spoke with two neurologist, one from the Cleveland Clinic and one from University Hospitals who concurred with my sister's cause of death. While death attributed to CMT is apparently rare. It is real. My own physician had a friend who he believes died form the disease but it was listed as " heart failure " . In my sister's case the syndrome paralyzed her diaphram which caused " respitory arrest " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2001 Report Share Posted August 6, 2001 Becky, I don't want to depress anybody by further discussing this subject, but it is interesting that it has come up as I have been doing some research on phrenic nerve involvement in CMT recently. First of all, I was not aware of what the phrenic nerve does until I found some useful information on the internet. Then, it became rather frightening, as I'm sure you are aware. I have been telling my father that CMT does not affect life span unless the phrenic nerve is involved. Of course, he wanted to know what the phrenic nerve was. Now I'm afraid that I may have opened a can of worms! He has never been specifically diagnosed with any type of CMT but just a " demyelinating disease. " However, local doctors agree that is is most likely CMT as he fits the description to a " T " ! Therefore, we keep searching. The thing is, he has not been able to sleep in the bed for about 8 months now. At first it was because he had eye surgery and wasn't supposed to lay flat. But when that cleared up he still couldn't sleep laying down because now he says that he can't breathe. Just the pressure of laying down keeps him from breathing well. He refuses to go thru any more testing, but my question is: If he has phrenic nerve involvement, is there anything (outside of perhaps CPAP) that they can do for him? Is there any therapy? Also, in all my reading, knowing how many different problems that you have said that you have, have you been tested for Myasthenia Gravis? Just wondering because you have many similar problems. Sorry this is so long. Hope you are feeling better (has your company left?) Take Care! ----- Original Message ----- From: Maxwell <rmax@...> < > Sent: Sunday, August 05, 2001 6:34 PM Subject: [] Sister died from CMT > I will not identify this person without his consent. I have talked with him about the death of his sister. I want to make aware the fact CMT can cause death for those who do not think it can. > > February 05, 2001 at 15:47:14: > > I know some people will want to correct that by saying she dies of complications of CMT but I think that is a form of denial on their part. People die of cancer not complications of cancer. People die of AIDS not complications of AIDS. The point is the literature says that it doesn't shorten ones life span. I don't believe that for one moment. And the literature says nothing about it being fatal. I think that is being less than honest. I spoke with two neurologist, one from the Cleveland Clinic and one from University Hospitals who concurred with my sister's cause of death. While death attributed to CMT is apparently rare. It is real. My own physician had a friend who he believes died form the disease but it was listed as " heart failure " . In my sister's case the syndrome paralyzed her diaphram which caused " respitory arrest " > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2001 Report Share Posted August 6, 2001 -----Original Message----- From: Mr. Bracamontes <bracamontes@...> < > Date: Monday, August 06, 2001 12:00 AM Subject: Re: [] Sister died from CMT >>>>>, if its a part of CMT depressing or not, it needs to be addressed, contrary to those who don't like hearing stressful or distressing things about CMT. Many things can cause discomfort with breathing while laying down, not just CMT. He really should see a Dr. about it. Expanding the diaphram with breathing exercises is good. Its good for all of us to do, CMT or not! LOL..... As for my being tested for MG, yes that and about 100 other diseases/conditions. See, when someone hears all my problems/symptoms, they find it hard to believe it is due to CMT. My family has an assortment of nerve/muscle conditions throughout its history. It follows no pattern. I now have a cousin and her daughter diagnosed with CMT. And it looks as if a few more will be soon. Sorry, but its CMT . ~>Becky M. Becky, I don't want to depress anybody by further discussing this subject, but it is interesting that it has come up as I have been doing some research on phrenic nerve involvement in CMT recently. First of all, I was not aware of what the phrenic nerve does until I found some useful information on the internet. Then, it became rather frightening, as I'm sure you are aware. I have been telling my father that CMT does not affect life span unless the phrenic nerve is involved. Of course, he wanted to know what the phrenic nerve was. Now I'm afraid that I may have opened a can of worms! He has never been specifically diagnosed with any type of CMT but just a " demyelinating disease. " However, local doctors agree that is is most likely CMT as he fits the description to a " T " ! Therefore, we keep searching. The thing is, he has not been able to sleep in the bed for about 8 months now. At first it was because he had eye surgery and wasn't supposed to lay flat. But when that cleared up he still couldn't sleep laying down because now he says that he can't breathe. Just the pressure of laying down keeps him from breathing well. He refuses to go thru any more testing, but my question is: If he has phrenic nerve involvement, is there anything (outside of perhaps CPAP) that they can do for him? Is there any therapy? Also, in all my reading, knowing how many different problems that you have said that you have, have you been tested for Myasthenia Gravis? Just wondering because you have many similar problems. Sorry this is so long. Hope you are feeling better (has your company left?) Take Care! ----- Original Message ----- From: Maxwell <rmax@...> < > Sent: Sunday, August 05, 2001 6:34 PM Subject: [] Sister died from CMT > I will not identify this person without his consent. I have talked with him about the death of his sister. I want to make aware the fact CMT can cause death for those who do not think it can. > > February 05, 2001 at 15:47:14: > > I know some people will want to correct that by saying she dies of complications of CMT but I think that is a form of denial on their part. People die of cancer not complications of cancer. People die of AIDS not complications of AIDS. The point is the literature says that it doesn't shorten ones life span. I don't believe that for one moment. And the literature says nothing about it being fatal. I think that is being less than honest. I spoke with two neurologist, one from the Cleveland Clinic and one from University Hospitals who concurred with my sister's cause of death. While death attributed to CMT is apparently rare. It is real. My own physician had a friend who he believes died form the disease but it was listed as " heart failure " . In my sister's case the syndrome paralyzed her diaphram which caused " respitory arrest " > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2001 Report Share Posted August 7, 2001 Sorry, but its CMT . ~>Becky M. > No apologies necessary, of course. Forgive me. I know you must be sick to DEATH of all of the " helpful " suggestions. I am the same way about Fibromyalgia. There have been times when I almost wanted the Dr. to tell me that I had some rare disease instead of " yep, that's the fibromyalgia! " I swear if I went in for a hangnail, they would say it was fibromyalgia. The frustrating thing is, it really does cause all kinds of occasional problems, sore throat, low grade fever, TMJ, pleurisy-type pains, the list goes on and on. Who knows, maybe fibromyalgia is caused by syphillis!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2001 Report Share Posted August 7, 2001 **** Oh Sue, That is the sweetest thing that your son said. My 13 year old is such a sweatheart, a real comfort to me. Kids are great! Take care, Melody > Just a little anecdote. My youngest son asked me what was the difference between burial and cremation so I told him. He then asked what I would like. I said I wanted to be cremated and my ashes scattered over a cliff into the sea. > He gave me a big hug and said 'You'll be free then won't you Mummy. You won't hurt anymore? > Love > Sue > The important thing is never to stop questioning. > Website www.horder-mason.freeserve.co.uk > Freelance Writer and CMTer > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2001 Report Share Posted August 7, 2001 -----Original Message----- From: Mr. Bracamontes <bracamontes@...> < > Date: Monday, August 06, 2001 9:56 PM Subject: Re: [] Sister died from CMT >>> I too have Fibro, it does get a little frustrating when others keep thinking gee, its got to be something else. LOL, Hey I wish it i was something else, something curable! Have a painfree week ahead, ~>Becky M. Sorry, but its CMT . ~>Becky M. > No apologies necessary, of course. Forgive me. I know you must be sick to DEATH of all of the " helpful " suggestions. I am the same way about Fibromyalgia. There have been times when I almost wanted the Dr. to tell me that I had some rare disease instead of " yep, that's the fibromyalgia! " I swear if I went in for a hangnail, they would say it was fibromyalgia. The frustrating thing is, it really does cause all kinds of occasional problems, sore throat, low grade fever, TMJ, pleurisy-type pains, the list goes on and on. Who knows, maybe fibromyalgia is caused by syphillis!!! Quote Link to comment Share on other sites More sharing options...
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