Guest guest Posted July 19, 2005 Report Share Posted July 19, 2005 Debbi Heiser wrote: For those who experience weird breathing problems, it may be related to "stridor" in some cases. I seem to remember from long ago in this group that someone's doctor had said that with the esophagus and the trachea being against each other that bulging of the esophagus could push against the trachea. So, the effect would be similar to stridor. Does that sound familiar to anyone? notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2006 Report Share Posted September 10, 2006 Hi Patsy, I have had a lung infection all summer. (Enbrel has been a wonder drug, but has made me vulnerable to infection). I had a C-Scan this past week, but I don't know the results yet. I see a pulmonary specialist next month. My rheumatologist tells me, " No more Enbrel! " So , I don't have a clue what the future holds. I hope you are breathing easier by now. Sincerely, Patsy Pasadena, California > > Hi > > I'm wondering if the breathing issues that I'm having over the past > two or three months is related to RA or if it could the Lupus, I don't > think it's the PBC/AIH. It's weird but I seem to lose my breath while > talking. I have to stop and deep breathe. I have no trouble walking on > the treadmill at 3.4 mph, but sometimes walking and talking at the same > time will also cause me stop and gasp for breath. Any suggestions or > input would be greatly appreciated. I hestitate to call my dr AGAIN. > I can see any dr that I want, will pulmonary specialists see patients > without a referral? > > Thanks > Patsy (63) El Mirage, AZ > DX 2005 > Stage 1 PBC > SLE/RA/AIH > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2006 Report Share Posted September 11, 2006 Patsy: Sorry to hear that you cannot use Enbrel anymore. That is terrible, since it was helping you for so long. I have found it to be very helpful for me as well, with Mtx. Are you on any other meds right now? I hope that your doctor is able to find you something soon that will be easier on your lungs. Good luck with the pulmonary specialist - hope they don't find anything serious. Take care - Kathe in cA --- pab91101 <pab91101@...> wrote: > > Hi Patsy, > > I have had a lung infection all summer. (Enbrel has > been a wonder drug, > but has made me vulnerable to infection). I had a > C-Scan this past > week, but I don't know the results yet. I see a > pulmonary specialist > next month. My rheumatologist tells me, " No more > Enbrel! " So , I don't > have a clue what the future holds. > > I hope you are breathing easier by now. > > Sincerely, > > Patsy > > Pasadena, California > > > > > > > > > > > > > > > > > Hi > > > > I'm wondering if the breathing issues that I'm > having over the past > > two or three months is related to RA or if it > could the Lupus, I don't > > think it's the PBC/AIH. It's weird but I seem to > lose my breath while > > talking. I have to stop and deep breathe. I have > no trouble walking on > > the treadmill at 3.4 mph, but sometimes walking > and talking at the > same > > time will also cause me stop and gasp for breath. > Any suggestions or > > input would be greatly appreciated. I hestitate to > call my dr AGAIN. > > I can see any dr that I want, will pulmonary > specialists see patients > > without a referral? > > > > Thanks > > Patsy (63) El Mirage, AZ > > DX 2005 > > Stage 1 PBC > > SLE/RA/AIH > > > > > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2010 Report Share Posted October 15, 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 2006 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! -) Quote Link to comment Share on other sites More sharing options...
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