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lizasbooks Message
16 Feb 2011, 09:55 PM

I am new to this but Janine I want you to know that in my case breathing is a big component of the Tubular aggregate myopathy. I was admitted to the hospital July 2010 for breathing issues and at one point stopped breathing. I was given a diagnosis of myasthenis Gravis, and was on oxygen from that point on. I was back at emergency in October 2010 for being unable to breath and was admitted to Stanford and once again stopped breathing, I was in ICU for 4 weeks and spent all but one day on the Vent after receiving a Tracheotomy. So yes most definitely breathing can be a component to this disease. I am currently back home and I use oxygen 24/7 to breath.
jeanie8285 Message
17 Feb 2011, 01:17 AM

Thank you so much for sharing with me. It helps a lot. My brother was at the doc again today, and the docs can't get diagnosis correct. neurologist says its cardiac issue. cardiac doc says pulmonary issue. tomorrow is the pulmonologist visit and i will surely give him this information to take with him. Without the docs knowing whats happening is very frustrating. ok, here come the questions......when did you first start feeling physical symptoms of the myopathy? when you say you are using oxygen 24/7, what type of machine is supplying it? when you were admitted to hospital in july 2010 what type of symptoms were you experiencing that caused you to go? Thank you so much again. These are difficult times for all and any little insight helps.
lizasbooks Message
23 Feb 2011, 07:32 PM

The symptoms had probably started a year prior to actually going into the hospital. It started off just being more and more tired and feeling like I just could not get enough sleep or rest. I found that I could get up in the morning and take a shower get dressed and have a cup of coffee and be ready to go back to bed at least a month prior to going into the hospital, I started going home after work and blinking my eyes and then my son would wake me up 2 hours later telling me to go to bed when I did not realize I had even been asleep at all. I would try to fall asleep at work standing up and was having a hard time remembering any thing I was told and I kept stumbling because my legs felt like 100lbs weights on them. I went to work on July 1st was talking to a customer and blinked my eye's and I was on the floor, my aunt took me to emergency and they put me on oxygen and a heart monitor, my my oxygen level was at 71% and I was on 4 liters of oxygen. Over night I stopped breathing and they attached me to a bi-pap machine that forces the oxygen in and out of your lungs for you. I was released from the ICU after 9 days and back on regular oxygen at 2 liters. I have a machine at home that sucks in air and creates oxygen that is in use as long as I am home and I have a small back pack from a small tank as a portable that I use when out and about. I am 1 to 2 liters of oxygen 24/7 and I do breathing exercises every day to help strengthen my diaphragm and my other muscles in my core. When I went to the hospital in July I found that even sitting up with pillows to breath and relaxing as best I could that I felt like I was suffocating and could not breath almost like a really severe anxiety attack, my son drove me to the hospital ER and I was admitted immediately and placed on 9 liters of oxygen and still felt as though I could not breath. The ER decided that they had already did what they could my 1st trip to the hospital and so they contacted Stanford and I was transferred directly. I was at Stanford and my oxygen was down to 5 liters and that night they had to tube me with the vent and 4 days later perform a tracheotomy. I am finding that because I am still not getting enough oxygen at night and have to turn it up that I wake up with a headache some times from not getting enough oxygen. I hope this helps you some.
snowrail Message
1 Mar 2012, 12:54 AM

Interesting. I'm having trouble with breathing as well, although it doesn't sound like it's as bad as yours yet as my oxygen levels have not been dropping below the 80's, not that this is good either. It was picked up in a routine sleep study that was done as part of the escalation of the opiates (methadone) that I take for the pain from the myopathy, which in my case is quite extreme. My sleep was excellent, but the study picked up central apnea, where my brain was simply not sending the signal to breathe. Now it also appears to be happening to a lesser extent while I am awake as well. At first they thought it was due to the opiate, and while there is some possibility that it's making things worse, it does not match the profile of opiate induced central apnea. And unfortunately that's where I'm stuck right now, without any more answers. Mystery central apnea. I have been experiencing increasingly troubling neurological effects and until more studies are done (awaiting CT scans since I can not be MRI'd due to metal in my body) we have no idea if it's TAM-related, apnea-related brain damage, or even psychiatric in nature (it's not as if this hasn't been stressful, although I'm generally a happy person). So I don't have a lot to add other than to say it's interesting to see other people with tubular aggregate myopathy with breathing problems, and wanted to add myself to that list for other patients and doctors reading this. Thanks for sharing your story.
jeanie8285 Message
1 Mar 2012, 03:18 AM

hi snowrail, thanks so much for your post. my brother has been through a few sleep studies also. he sleeps with a c-pap machine. it's been a year since my post asking for info from others and still we have no answers from his docs as to why his heart rate slows so much at night. he is not on any meds for the pain from the TAM. he doesn't like taking them, it always seems they make him feel worse. i was not aware of apnea related brain damage and will certainly do some googling on that. it's all still a mystery...always more questions than anwers. i just wish there was more research being done or more docs that offer answers/treatments. TAM seems to have such different effects on everyone. my best wishes for all of you.