Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 Hi, I am the one with possible mito and with the breathing/swallowing problems. I went to the pulmonary doctor on thursday and he checked my oxygen level (the thing they put on your finger) and it was only 85% so he scheduled a CT scan which showed no blood clots in my lungs, and I go for a pulmonary function test tomorrow (monday) and a echo on Wednesday. He put me on oxygen at night and during the day when active and as needed. The oxygen helps a lot. I just wanted to update everyone. So atleast I am on oxygen. If I do have mito will the pulmonary functions test show something?? I just want answers so bad. I have to wait until the 29th to get a consult for the muscle biopsy. Thanks and will keep you posted. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 Hi , I'm on O2 like you. My stats in the night are in the 70's to low 80's. In the daytime, I haven't seen a problem with my stats but with Mito, it would have to be tested at exactly the moment the reading is down. I can actually tell when I am needing the oxygen and I too am told to use it as needed in the daytime. I've gone for the pulmonary function testing and did ok but the overnight pulse ox is very much the opposite. What level is your Oxygen set at overnight? Mine is on 2. Good luck with your consult. Alice Hi, I am the one with possible mito and with the breathing/swallowing problems. I went to the pulmonary doctor on thursday and he checked my oxygen level (the thing they put on your finger) and it was only 85% so he scheduled a CT scan which showed no blood clots in my lungs, and I go for a pulmonary function test tomorrow (monday) and a echo on Wednesday. He put me on oxygen at night and during the day when active and as needed. The oxygen helps a lot. I just wanted to update everyone. So atleast I am on oxygen. If I do have mito will the pulmonary functions test show something?? I just want answers so bad. I have to wait until the 29th to get a consult for the muscle biopsy. Thanks and will keep you posted. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 In a message dated 7/18/2004 11:22:48 PM Eastern Standard Time, lfitzger@... writes: My last pulmonary function test showed an air exchange at 52% of normal. HI Laurie, Is this the same as MIP (maximal inspiratory pressure) MEP's (maximal expiratory pressure) where they are measuring the force of inspiration and expiration? On my PFT's, these were the only things that were abnormal and the pulmonologist said that they reflect muscle strength. Mine came back at 30-40% of normal. My only respiratory symptom is shortness of breath when I am tired or don't feel well but he said that the shortness of breath could be caused by this. Malisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 I haven't experienced any headaches from the oxygen. This sounds like sleep apnea to me. Have you been tested for that? It is very prominent in Mito patients. Alice Mine oxygen is set on 2 also. Did you get headaches at first?? I did but I don't know if it was a coincidence or what. The oxygen del guy said it might have been the smell of the plastic. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 Some breathing problems are very mito related and don't show any abnormalities. I had all the same testing, along with a sleep study and blood gases. The only abnormal things were the sleep study which we knew about. I don't really stop breathing, but my breathing is so slow and shallow that I have used a CPAP and O2 for several years. My last pulmonary function test showed an air exchange at 52% of normal. I haven't met with doc to discuss this yet. My O2 levels are in the 90s when they put the oxometer on my finger. laurie > > Reply-To: > Date: Sun, 18 Jul 2004 23:33:25 -0000 > To: > Subject: Re: Pulmonary doctor appt > > Hi, I am the one with possible mito and with the breathing/swallowing > problems. I went to the pulmonary doctor on thursday and he checked > my oxygen level (the thing they put on your finger) and it was only > 85% so he scheduled a CT scan which showed no blood clots in my > lungs, and I go for a pulmonary function test tomorrow (monday) and a > echo on Wednesday. > > He put me on oxygen at night and during the day when active and as > needed. The oxygen helps a lot. I just wanted to update everyone. > So atleast I am on oxygen. If I do have mito will the pulmonary > functions test show something?? I just want answers so bad. I have to > wait until the 29th to get a consult for the muscle biopsy. > > Thanks and will keep you posted. > > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail is > entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with their > physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2004 Report Share Posted July 19, 2004 Malisa The air exchange is a measure of how much air you are getting in and out. It is a test where you breath in and out at their command. I had to stop because I couldn't get enough air out to get more in. Of course, that meant that I had to do it several times more. My MIP and MEPs were normal. laurie > From: Malilibear@... > Reply-To: > Date: Mon, 19 Jul 2004 01:03:13 EDT > To: > Subject: Re: Re: Pulmonary doctor appt > > In a message dated 7/18/2004 11:22:48 PM Eastern Standard Time, > lfitzger@... writes: > My last pulmonary > function test showed an air exchange at 52% of normal. > HI Laurie, > Is this the same as MIP (maximal inspiratory pressure) MEP's (maximal > expiratory pressure) where they are measuring the force of inspiration and > expiration? On my PFT's, these were the only things that were abnormal and the > pulmonologist said that they reflect muscle strength. Mine came back at 30-40% > of > normal. My only respiratory symptom is shortness of breath when I am tired or > don't > feel well but he said that the shortness of breath could be caused by this. > Malisa > > > Quote Link to comment Share on other sites More sharing options...
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