Had my new breathing test: And the... - British Lung Foun...

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Had my new breathing test

And the results were the same as they were in February. I feel terrible, and my pulmonologist seems puzzled. My FEV1 was 70 percent. She told me my emphysema/asthma is "mild." She listened to my heart and lungs. I had an x-ray just two months ago. She says my lungs are clear. So now my doctor seems to agree with everybody else that a lot of this "is in my head." She has a very good reputation and works with a pulmonary group at a major hospital here in Mobile. I like her and have no doubt that she is a good pulmonologist. She seems hesitant to give me a lot of the "numbers" from my breathing test, but insists they do not indicate the complaints I am making. Sooooooo ... she wants me to see a neurologist. She is making an appointment for me. She thinks I could have muscular problems in my upper body that might by affecting the action of my lungs. Has anyone ever heard of this? I have never, ever seen something like this mentioned on this site. Of course I will do as she suggests. So, anyway, I left her office (which was crowded, my God!) feeling the same as when I went in. No medication changes (I asked), no steroids (You don't need them). My 02 sats were 98 percent. The nurse giving me the breathing test said that's hers are too. Oh, well. I might just be crazy. Thoughts?

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You wrote “she (Pulmonologist) seems hesitant about giving you your numbers “! What the 🔥 does that mean ? She works for you not the other way around . You have a right to your test results and if she is such a great Pulmonologist why haven’t you been given a Ct scan ? She cannot diagnose you as having Emphysema if there is no CTScan to back it up. An X-ray is not proof at least not in The USA. I had X-rays and was told my lungs were clear . That means zilch. No shadows which is good but you are saying you have mild Emphysema but an X-ray cannot see that . An X-ray can show moderate emp but not mild . You should demand your PFT/ Spirometry results as well as a written impression of your X-rays. How was your RV numbers ? What was your FEV1/FVC ? Do you have air trapping? These are the questions you need to ask your doctors or you will always be in doubt which can cause more anxiety. Demand these answers like I said you must be your own advocate and they work for you not the other way around . Good luck my friend!

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Dammit, RedSox, I need you to accompany me to my next appointment. I always feel guilty for taking up so much of her time. My God, what a crowd she had to see her today. But what did you think about the neurologist thing?

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The neurologist thing sounds okay you never know I also suggest an appointment with an endocrinologist as the thyroids are a big player in chemical balance in the body

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So, RedSox, can you describe to me how you feel most of the time? I feel like crap almost always, yet the doc say I'm mild. I wonder if I'm just more sensitive to SOB than other people. I mean, I have COPD. It should be no surprise that I don't feel great. But, I swear, when I went in for today's breathing test I was certain that I would hear that I'm end stage. In other words, maybe I'm just a wimp. And I mean that, no joking. Maybe with me I just can't handle any respiratory adversity at all, while others can up to a point. I've read a lot of stuff on this site and others and I've never heard of a neurological link to COPD. Have you?

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I agree w

org efsox you need a ct scam...98 is not bad

I have COPD and my oxygen saturation is 94/5 most of the time sometimes 92 but I do have inhalers that keep me moving.I think you need the Dr just to reassure yourself.

good luck

ragrug

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meant to be ct not doc.

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Your not a wimp it’s just that lung disease affects everyone differently. I have good days and some bad but mostly good because I don’t think too much anymore I kind of live on instinct. Just learn to relax I know it’s hard but maybe you can try yoga, Pilates or tai chi . Please try ...... peace

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Maybe she doesn't want you to be anxious about numbers. I'm an oxygen user minimum 16 hours and don't know either my numbers or stage I'm at. I use my emergency meds when needed and get help when more severe. At the last test a year ago was told there was little change from the previous one which was fine , for me it's how I feel that matters and take a day at a time and try to get out as much as I can manage for exercise and a well being feeling. If I did ask for a copy report though I would expect to be given one.

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Hi challny. Just a thought. A friend of mine with otherwise healthy lungs had problems of breathlessness for some months. All tests proved negative and her GP got to the point of giving her anti depressants. She finally went to an osteopath who discovered that her ribs were not parting properly to allow her lungs to inflate properly because the muscles were too tight. She had several treatments from him and has been fine with occasional treatments since.

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I agree littlepom my ribs especially left kept me feeling lousy. My air was being trapped due to inflammation in my ribs.

I was sent to physical therapy for two months ....Result was ribs and core we're stronger, the excercize got me breathing better and over all felt better. I do have to keep excercize up for ribs to have elacidity. I hope there is nothing nerologicaly wrong...yet getting checked to eliminate any thing wrong is always first . Challny I hope you feel better soon !!😊

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Thank you, Marielove

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Anxiety can play a role in how you feel. I think the doctor is trying to reduce your stress by not giving you all the numbers etc. Spirometry tests can vary so much that I do not get over excited if there is a drop or improvement. I have blown a 69% and a 51%. However I can still do 800m+ on a six minute walk test. Your Doctor is sending you to see another specialist to rule out other causes so I doubt that she believes it is " in your head". Medicine is often a process of elimination of possible causes. From your description of having clear lungs, heart etc the doctor feels that it is not your lungs that are the problem and is now searching for other causes. I think she is correct in not giving steroids in your case. Any medication given carries a risk when you take it. Given that you have clear lungs and good oxygen saturations why would you need steroids?

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I am so sorry you feel so poorly. But can I please ask you what symptoms are you having as you say you feel ill all the time?

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Hi, Tilantoe. My symptoms are what you would typically find with emphysema. Mostly just SOB and tired. Not much coughing.

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After looking through your other posts. Sounds like you have had a lot of emotional upheaval in your life just recently. As you felt better on xanax it could be anxiety. Don't rule other physical tests out. But anxiety makes breathing much much worse when you have copd. Also I noticed you stopped your preventer. This really helps to stop flair ups and relaxes the lungs. So you could have a low grade chest infection. So get that checked out and insist on a ct scan. But you must learn to relax and stay calm. I am not an advocate for more and more meds but some we really need. Some inhalers work for some people and not others. It's trial and error. But taking too much ventolin can cause the feeling of anxiety. Hope this helps. Best of look to you hope you feel calmer and better soon.

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I agree with Littlepom above. Sometimes the damage from my RTA in 1977 causes my back to spasm around the base of the lungs, making breathing harder, and my osteopath is usually able to treat it with one session now, although it took a few sessions to sort it initially.

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Have you had a pulmonary function test? You definitely need a ct scan.

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Hello, Gary56. Is a pulmonary function test the same as a spirometry test? Where you blow into the machine and it's recorded on a computer? I had that kind of breathing test yesterday and a couple of times before. Pulmonologist said my results have not changed: 70 percent FEV1. She said "Mild." Emphysema/asthma. I have had x-rays but she has never ordered a ct scan, and I have never asked for one. I wonder what more a ct scan could tell her? Anyway, if what I've got is mild I can't imagine what it must be like to worse. I feel terrible and I feel that way most of the time. I guess I just have to come to grips with this fact. But that's one thing that I always wonder. Do others with this disease ever feel OK?

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Again , how can they say you have Emphysema on just a test ( which you are not sure is an actual Pulmonary Function Test or the quick Spirometry Test) what are you RV values? What is your diffusion numbers ? What is your FEV1/ FVC ? There are a variety of values that come to an estimated clinical diagnosis. Then there is the CT scan , which you haven’t had yet so I would look into it all and then get a diagnosis. I cannot believe you being in US and they are diagnosing you without CT, Spirometry, PFT , X-ray combo. @Chriskho makes a great point about exercise induced asthma as it can be very possible. I’ve suggested these things before as well. If your not satisfied with your Pulmonologist then find a new one. It’s your health we are talking about not your doctor’s “feelings”. Remember they work for you not the other way around. Good luck !

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RedSox, I am so effing confused. The doctor tells me my lungs are just not that bad. I said, maybe a change of inhalers. She said no. I said what about steroids? She said you don't need them. So today, after being told I'm hardly sick at all, I go over to my partner's house and mow and blow her front and back yard. Lord have mercy, it wore me out. I stopped halfway through and went home to suck down some Ventolin, then came back and finished. That has never happened before. I just don't know what to do. I've said this before, my pulmonologist has a great reputation. I've heard it from many different people, including the nurses at pulmonary rehab. Yet when I tell her I feel terrible, he response is you're fine. I WANT A HUNDRED POUNDS of steroids. I don't care what the side effects are. Oh, well. At least Susan's yard looks very nice.

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Did you look into the Exercise induced asthma theory it is very possible! Especially since your physical activities are now becoming harder . Talk to your Pulmonologist give it a shot . Again without the numbers from your PFT(which should include pre dilator and post dilator) = whether or not you have Asthma and or Emphysema. The numbers give the Pulmonologist a solid guide that’s why I believe your numbers are important.

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Hi. I'm curious as to why you say you want a hundred pounds of steroids. Have you taken them before?

If you have and felt better, because their main role is to reduce inflammation, than perhaps you have been colonized by some pathogen and have a chronic low level infection?

Shooting in the dark here, based on my own personal experiences, but have you done sputum tests to see if there is infection?

But, I do know from years of taking prednisone that you don't want this drug and its very nasty side effects unless it's absolutely necessary.

I do wish you all the best,

TomTitTot

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Hi, TomTitTot. I have had two short courses of steroids before. I can't really remember if they helped or not. I just said that in my post because I'm feeling so poorly and would be happy to try anything that might help me feel better. If I had a low-level infection, wouldn't I have a fever? I just saw my pulmonologist two days ago and I had no temperature. I told her I felt poorly, but she acted as if there was nothing she could really do for me. I took a breathing test and she said my FEV1 was 70 percent and that my condition is "mild." She seemed to think that I should not be feeling as poorly as I claim, but she offered nothing more. I guess it's just so hard for me to accept the fact that I feel so sick and will continue to feel this sick and likely much worse for the rest of my life. That's why I mentioned the steroids. I would be happy to take a dangerous drug if it provided any relief, even short-term.

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TomTitTot, I'm sorry; I forgot to thank you for your initial reply. I am always grateful for the responses I get on this forum. I am all alone with this disease and this is my only outlet to rant, to seek advice and guidance and maybe even some comfort.

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What is your life like? I guess that a lot of your focus is on your diagnosis. I remember a time when I became my illness. It's a rough place to be.

You say that you feel so poorly, did this start just after being diagnosed? I mean what was your life like before?

Oh, by the way you had a temperature 🤒, just not a fever😏.

Anyway, I hope you do get some answers that help resolve your distress.

TomTitTot

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I started feeling poorly shortly before my diagnosis. It happened overnight. One day I was fine, the next day I was not. I then went to the doctor and got my diagnosis. But you are correct, I have become my illness. I don't know how to change that.

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Have you tried cannabis oil if you search it on this forum there is a few people who have said it has helped them alot.. Some have even said it has improved there fev

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70% is good. I’m wondering because of your exercise regime if it could be exercise induced asthma related. I agree you should take all the tests available and try to get a ct scan. ( may have to pay ?) hope everything eases a little soon. I find alcohol and milk isn’t good for my breathing . I now drink little and use lacto free milk. I have to take a zopiclone tablet ( have tinnitus) which gives me better sleep. Good sleep is a real bonus.

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CT scan will 100% tell you if you have anything or not that's how i found out i had emphysema.

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Well, I happen to love alcohol and milk. What can I say? I have cut back a little on the milk. Alcohol does more to relieve my symptoms than any inhaler I have. And I'm not saying I'm guzzling booze all the time. But a couple of drinks in the evening with dinner seems like a tonic.

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Thank all of you for your caring and informative replies. I guess what I'm wondering is, do some of you with COPD feel good some of the time? Especially if you have been diagnosed with emphysema? From reading this forum, it sounds like some feel pretty good some of the time. I never feel "good." Just sometimes not as bad as other times. Today I feel crappier than I did yesterday, for example. Now, yesterday, I mowed my lawn in the morning. Mowed, edged and blow. My yard looks very nice, if I must say. It was not overly tough, but it was not easy, either. Then, in the afternoon, I drove up to the golf course and played 10 holes of golf with two friends. I drove in a cart the whole time. It was brutally hot. I was able to play, but I felt uncomfortable the whole time. So that was a pretty active day for me, mowing the lawn, playing golf. My point, I guess, is that I CAN do these things, it's just that it's quite the struggle for me to do them. What I'm wondering, and I think I'm becoming redundant here, is do all of you feeling poorly ALL the time? Because I do. So perhaps this is something I just have to come to terms with, that I will never, ever feel well, even for short periods. It's obvious my doctor can no longer help me. At least, she can do nothing to make me feel better. I want to try steroids, even if they destroy my body -- if they can make me feel well for a short while. I hate myself for complaining all the time. I thank all of you for trying to help. I'm not in a good place. I'm also pretty upset that our friend Sharona, who was so much stronger than I, lost her battle.

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Hey challny what’s happening. You mentioned Spirometry or PFT . PFT is a little bit more involved . Did your Pulmonologist give you a copy of your test. If not , get it. I don’t even have to ask my Pulmonologist. He gives it to me and goes over most of the numbers . FEV1, FVC, FEv1/ FVC, Dlco , RV FEV25 etc etc these numbers can assist in your diagnosis but again you must ask for CT Scan an X-ray not as accurate. It your Pulmonologist says no that get rid of her. They cannot, I repeat cannot diagnose you you with mild emphysema without a full battery of tests .PFT, Spirometry, blood gas , CTScan , diffusion. Things may be different in UK but in US it must be though those steps . I’ve noticed a lot of folks in UK with COPD but with no CT they may not have Emphysema element . It’s not always an overlap. Mostly it is but not always. Again the whole umbrella scenario of which I’m not a disciple of and neither is my Pulmonologist. He believes COPD/ emphysema, COPD/ Chronic Bronchitis, COPD/ overlap and the others . You need a clear diagnosis, although treatments are relatively similar they affect different parks of the bronchial tree. Good luck

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Costochondritis

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Hey, RedSox, I am in the U.S. I'm beginning to think my pulmonologist is not as great as I've been led to believe. I mean, I go into see her and tell her I'm feeling terrible and she says you're fine. I AM NOT fine. I really don't care what I've got; I would just like some relief. I'm supposed to see my GP soon and might get some better answers from him. Maybe it's my heart or something. Do you feel terrible all of the time? Because I do.

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Good luck take a deep breath wait for your appointment and enjoy the NFL tomorrow. If your in Mobile you possibly a New Orleans Saints fan ?

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I am a Saints fan -- and a Bama fan. It's more fun being a Bama fan. The Saints suck, and they have for some time. What a waste of a great QB they have in Drew Brees.

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Dude I’m a Jets fan and I’ll take Drew Brees in a heartbeat and I’ll switch players with you anytime Saints are ok it’s the Jets that suck it’s been 49 years since they won Super Bowl I was like 15 years old lol it’s been a long wait

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Have u had a sputum test done...maybe you have picked up a bacteria which can be common with lung disease. cat scan should also be done

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