Guest guest Posted October 14, 2010 Report Share Posted October 14, 2010 Hello Everyone, Because of the deterioration of the peripheral nerves around my sister's phrenic nerve, which were causing deteriorating of her diaphragm... my sister ended up in ICU from CMT-1A, in 1995. She was put on a trach for 9 years. In 2004 my sister died from CMT, at the age of 56 without any secondary conditions. In 1995 I was diagnosed with the deterioration of the peripheral nerves around my phrenic nerve, which was deteriorating my diaphragm. Once they found out I also had the same problems, as my sister, they put me on a bi-pap to hopefully slow down the progression of my phrenic nerves, and diaphragm nerves from deteriorating. In 1996 and 2004 I went to a sleep lab to change my bi-pap settings. Between 1996 and 2010 I did not get the help I needed from my Pulmonary Dr. Each time I asked for help he told me to raise the head of my bed. My symptoms were: I couldn't lie down without feeling like I was suffocating, I would awaken in the night with a panting type breathe, heart palpitations, tremors, my body was deteriorating at a much quicker pace, This had been progressively getting worse for about 4 years. I saw a new doctor a few weeks ago. She had me do a sleep lab ASAP. The night my new settings were changed to my V-pap most of my breathing problems disappeared. Thank God for my new doctor! During the past year and a half I have gone through breast cancer, extreme atrophy, and a blood clot all which could have been triggered from low oxygen levels and CO2 poisoning. I know of 4 other people passing away from CMT because of the deterioration of the peripheral nerves around their phrenic nerve, which deteriorated their diaphragm and dying without any secondary conditions. More than ever I know the importance of getting a good doctor.I've seen in our family how easy it is to believe a doctor who says there is nothing they can do. I believe and seen that sometimes the family becomes desensitized to the problems with CMT and they don't really realize what is going on. If anyone has any suggestions please feel free to email me at ilovewater333@... Prayers are great too! -) Kay on The Beautiful Oregon Coast ;-) Quote Link to comment Share on other sites More sharing options...
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