Asthma or COPD

[Grailhunter]

My MD says I have COPD but none of the test or most of the usual symptoms support this.  I don't cough unless I smoke, "allot".  I don't hack up mucous and I don't wheeze inhaling, and would only have a barely audible wheeze at the very end of a exhale if I smoked, "allot".  I have had 4 chest xrays showing normal.  One CT scan showing normal.  One PFT at the Hospital in the booth that came back normal.  Another PFT at the Pulmonologist that showed normal.  My symptoms are what I would call tight breathing if I don't use inhalers.  I use Foradil twice a day.  I use a nebulizer in the morning with Albuterol, followed by Atrovent.  This gets repeated usualy mid afternoon.  Nightime I use the Foradil and two shots of Atrovent going to bed and I have no breathing problems all night.  Without these, my breathing feels labored, even though I could take a PFT at the same time and it would show normal.

So anyhow, my question is basicaly this.  Does this sound like COPD when there is no coughing, wheezing, or sputum, and both PFT's, Xrays, CT were normal, or does it sound like what the Pulmonolgist said, which was everything looked good but my lungs were for some reason acting highly reactive.  And I could not figure out highly reactive in what sense, since I don't asthma wheeze either.  My breathing simply feels labored and tight, even to the point of senseing a feeling of back pressure sometimes useing the rescue inhalers.  Can you have tight lungs without serious bronchial restriction?

[TeaGal]

Thanks and yes, it does all sound good and I started cutting back on the inhalers as soon as I left his office. Soon I will start the weanig process to get off the prednisone. The other Dr. wanted me to get weaned off it in 2 months time. This Dr. says it may take a year. That even made sence to me. Afterall, I have been on it for 4 years.
I feel so much better knowing there is hope. Not a lot of hope but some. The Dr. did tell me I will probably always be short of breath, just hoping not this bad.
This Dr. has also been in this field for 34 years. I think it made the difference in treating me.
Thanks again and I do hope you are doing well also.  

[Grailhunter]

Sounds like he has a decent plan.  I like his idea of not useing the inhalers as much and getting your med use down.  Some Medications can really kill respiratory drive.  When I decided my Doctor didn't really know what he was talking about and pried myself out of my house after six years I started walking.  My breathing was so bad from being so out of condition and overmedicated for so long that I was out of breath going from my desk to the refrigerator.  So when I started walking outdoors it was a huge strain to do 200 yards.  Inside of a month I was doing 4 miles at 6200 feet elevation.  A month latter I was doing that, plus hiking a 1000 foot high, very steep hill a couple of times a week.  Now I basicaly brisk walk about 2 miles a day morning, hike the big hill once a week and swim about 20 laps.  This is the same guy that 2 years ago was leaning on the stove for support after making the trip out to check the mail.

Anyhow, the point being, until the meds are straightened out and your breathing more on your own with less reliance and building up your capacity and condition, who really knows how far you can bring yourself back.  If that first Pulmonary Doctor thru in the towel, I would say that is a plus for you on how far you can return.

Read that post I put up on chest wall restriction and breathing musculature.  That was caused by 6 or 7 years of very bad medicine and medical advice that had me convinced I was so disabled there was nothing to be done but apply for disability and basicaly rot away inside of my house.  It was actualy SSDI running the test my Doctor never bothered to run, and disproving his unfounded diagnoses that made me realize my Doctor was horrible.

Glad to hear you got yourself someone that seems to have a clue.

[TeaGal]

Just got bak from my appointment. This is basically what I was told and I do believe it all to be true.

He doesn't believe I have asthma, he believes it is strictly COPD (chronic obstructive pulmonary (lung) disease). He did say I have asthmatic flare ups and his main concern today was the amount of steroid I am on. Doctors don't like anyone to use a steroid in access and I've been on it for 4 years. The first thing he is going to do is wean me off of it (the steroid) and gain control over the other medicines I am on by getting me on a lesser and lesser dose of those.
He says I have been over-medicated. For now he wants me to try and NOT use the inhalers as often. He suggested I see if catching my breath would result in better breathing than pumping inhalers into me all the time.
I'll be going back to see him next week (Thursday). He has to get the results from all the tests I had done at the hospital back in January.
He did say on Thursday he would start making major changes in my meds and for me to relax, hang in there and only do what I can do and not worry about nything else.
Easy for him to say. I can't do much but I guess I'll just do not much slower for another week.
I liked this guy and I could tell he talked from experience, not from text.

[TeaGal]

I'm going this morning for a 2nd opinion. My Pulmonologist has given up so to speak. He admitted defeat and said I should look for answers elsewhere because he is clueless to my condition.
I'll be back hopefully with some positive answers. I won' t take no for an answer.

[kiddd]

Thank you for looking and your input it gives me other things tto think about.  Hope you feel better .
K

[National Jewish Health]

With all the tests you mention, normal, you are unlikely to have anything more than mild chronic obstructive pulmonary disease (COPD) from smoking.  More likely, you have asthma and that would improve with the inhalers you are using.  "Highly reactive" refers to an increased tendency of your bronchial tubes to constrict.  It is characteristic of asthma.  You should ask your doctor, what is the basis for his stating that you have COPD?

[Grailhunter]

Okay, I will take a look at it.  There are a number of muscles in the neck that can relate a sense of constriction, irritation, a knot like feeling in the throat, smothering, choking sensation, can't breath, can't swallow right, feels like something is in there I can't get up and so on.  The muscles that cause this effect the most are the Sternocleidomastoid muscles.  They upper connect at the bony pertrusions right behind the ears and run down the sides of your neck with the lower connection at the top of the sternum.  They are major head support muscles that are there to balance head posture and support and hold it back and up straight.  Allot of people have problems with these muscles anymore because of so many desk jobs and computer use with bad posture where the body is sort of hunched forward with rounded shoulders and the head leaning forward.  If those muscles get real tight, you might not even feel any pain in them, but they can cause a load of symptoms including not just what I already listed, but a whole lot more including severe headaches, ballance and dizziness issues.  They also get involved in imballanced breathing patterns because part of their job is to be assessory muscles to help lift the sternum and ribs for deep breathing.

Any, not that this is your problem.  Its just one of my problems that is part of my breathing issues that cause a ton of tension and constriction symptoms around the throat and upper chest.  Might be worth your time to look up Sternocleidomastoid Symptoms.

[kiddd]

Please see "coughing coughing coughing" do you have a throat clearing/coughing cant cough it up cant swallow it down problem?

[Grailhunter]

Yup, push him to give you answers and the best solutions.  Your a individual and your needs to be addressed as such, not by the standard of patient care the medical community all got together and created and gave it a title that makes it sound like its for the patient when its really about protecting them from lawsuits.  If they all give the same treatment to everyone for any given perceived condition and they blow it, but every other Doctor would have blown it in the same situation, their protected.  That in a nutshell is the standard of patient care.  That system works as long as your problem has the work done by them, that correctly diagnoses your condition.  If they don't look far enough into your problem to really find out whats going on, you stand a very good chance of the treatment being ineffective, doing you harm, or letting you slowly deteriate away.  So make him do whatever he has to do to give you solid answers on where you stand and what to do about it.  And yes, please tell me how come out with this, and I wish you the best.

[TeaGal]

I hear what your saying. I had bronchitus 6-7 times a year every year for 20 years. Go figure!! Why are my lungs shot? I don't think it takea a rocket scientist to figure it out.  Monday moning (it's Sat now) I am calling my Pulmonologist and telling him something needs to be done. He needs to try a different med until we find the right one or put me in the hospital until I can walk and breathe somewhat normal. I wan tto be able to get my own mail. I really don't think that's too much to ask.
I will be back to let you know the outcome.

[Grailhunter]

These post are limited to 2000 words, so I am splitting my mini rant on what I feel is a really messed up system of patient care that really does not take into serious account the long term impact this form of sloppy treatment has on the quality and well being of human lives.  I went to my Doctor years ago, like most people and said, I feel I am breathing badly for some reason.  My lungs sounded clear, my oxygen level was normal and no hint of wheeze or restriction.  I got the standard question.  Do you smoke.  No I don't, but I did for about 15 years.  I got the 3 minute diagnoses because I had smoked.  You have COPD and heres your script for albuterol.  He then said the chest Xray would tell the tale.  The chest Xray was clear and normal.  Well he says, lets use our office spirometer.  I blew the thing to the end 3 times in a row to 950.  Hmmm, he says, lets get you a real Pulmonary function test.  This will tell the tale.  I exceeded the normal levels on the first 3 tries.  They didn't even bother to use a diolator and run them a second time, because they were over the normal levels without it.  Back to the Doctor I go.  Lets run a CT scan of your lungs.  This will tell the tale.  The CT came back normal, showing no damage or lung wall thickening.  Still he insisted that their was something very abnormal about my lungs and sends me to a Pulmonlogist.  He runs his PFT and it comes back better then the first one.  My lungs are clear, no wheezing or coughing and I am still feeling like I am breathing lousy and every muscle in my upper body that has anything to do with breathing is in pain.  So, I still have no answers.  I suggested to them that they send me to a Doctor that was a specialist in muscular problems and therapy to try to straighten up this problem.  Is it not possible that the 7 years of recuring bronchitis and sitting at home 24 hours a day disabled, might have something to do with a weak, tight, painful, uncoodinated, tied up breathing that might explain why I don't feel like I can breath.  My MD looked at me like I was from Venus.  He had no idea what I was talking about, and yet there are a hundred websites out there ran by Pulmonary Therapist, Osteopaths, Chiropractors, Massage Therapist that know exactly what I am talking about.  It just gives me a "insert sarcasm here" warm feeling of security that the people that are supposed to know what is going on don't seem to really have the ability or possibly willingness to find out when peoples lives depend on them to know.  

[Grailhunter]

I think your 100 percent right about different inhalers working better or even making the problem worse depending on the person and I think that has allot to do with the fact that there are so many variables as to what and why a person has a breathing problem.  The combination of Foradil and Atrovent seem to work the best for me and I have to keep a tight reign on useing Albuterol very strictly to the times I am actualy having a attack.  I can't even use my nebulizer regularly or I make my breathing worse from overdilation and inhaler dependence.  This concept really sort of ticks me off in a way because like most people that run into breathing issues in mid life, they at some point go to their Doctor, or a Doctor and the standard of treatment is to give them a script for Albuterol.  So for seven years I was fighting a sometimes mild to frequently moderate, chronic bronchitis problem with the wrong drug.  And I feel that most of the damage that has been done to my lungs is from cheap, toss the script of the day misdiagnoses.  Maybe misdiagnoses is not really correct either.  Its a lack of willingness to get in there and do the work that needs to be done to find out what condition a person is really in and why and then treat it correctly.  It seems that by the time they finaly get around to it that many times the diagnoses and treatment is easy because it has gone on for so long being incorrectly diagnosed and treated that now the persons lungs have been so injured that the standard, easy test are picking up the problem.

[TeaGal]

Thanks. I even went as far as asking my Pulmonoligist to let me try the foradil and atrovent. I was feeling a bit better but I have come to realize the foradil is not working for me. Any of the inhaled powders make me worse. I do think using my stand by azmacort along with the atrovent I should see better results.
I stopped the foradil as of the last dose I did last evening. I should start feeling much better today if I am right about the foradil.
Yes, it's been too long and I plan to follow up with my Dr. Monday and I am making him do something. I'm even going to request he hospitalize me and run tests until this is taken care of.
Thanks again for your support and I hope you get results soon.  

[Grailhunter]

TeaGal, I have to say that when I read those levels of problems I wonder what in the world I am complaining about.  I hope you start feeling better or at least get some answers.  I think the lack of answers as to what is happening is probably worse then the problem itself for me.

[doesntmatter]

I understand what you mean, 4 yrs being to much. this started nearly 7 yrs ago for me, all the things i had planned and so on never reached fruition. because of my problem i compromised myself into a corner. doctors are either unwilling or unable to help me.

I also understand what your talking about hunter. that idea, its not that im out of breath but rather than im wearing myself out maintaining a normal oxygen sat. Wish i could say something more useful but i cant even get help for myself.

[Grailhunter]

10000 words latter, if you bothered to actualy read this much let me see if I can narrow this down.  My FEV1 is 93 percent predicted and the Xrays and CT scan shows nothing.  My oximeter reading is always at 97 or 98 regardless of what I am doing, sitting, walking, running, or hiking a mountain.  I don't run out of air or breath abnormaly hard.  On the contrary, my breathing problem is more on the order of a very persistent chest tightness and inability to consistently breath freely.  Today was the perfect example of this problem.  It was 112 degrees where I live.  I could walk outside and my chest would almost imediately tighten up and I felt like I was suffocateing.  Then walk back inside under the air conditioning and I could breath in a couple of minutes, but the chest discomfort was still there, but not nearly as bad.  So I just can't understand what can be happening if the PFT's are ruling out obstruction, and not showing restriction when they are being taken, and the CT scans that are showing clear are ruling out emphysema damage, then what would the problem be?  If my ability to breath freely and deeply is impacted the most by very hot, or very cold weather, isn't this basicaly indicateing asthma?

[TeaGal]

I forgot to mention. I have no cough, no wheezing and no phlegmn. I am simply short of breath. I can't walk 50 feet without having to stop to catch my breath and I am awakened nightly and have to use the rescue combivent.
I quit smoking 3 years ago. I live dup north and during the winter months I would get bronchitis 4-6 times per year. Moving south I no longer get bronchitis.
None of this makes sense to me.

[TeaGal]

I have severe asthma (COPD) and it goes uncontrolled. I am on 10mg. of prednisone and have been on it for the past 4 years. I try to wean off of it and I can't catch my breath. I've been on as much as 60mg. a day.

I am also on azmacort inhaler 4 puffs 4x's a day along with combivent I use 4 x's a day plus as a rescue inhaler.
I also use the nebulizer with albuterol. That is prescribed at 1 vial every 6 hours. I use it far more than that most of the time.

In the past I have tried the advair and most recent the asmanex. Both made me worse. I don't see how breathing in a powder is suppose to help anyway but I did try. After 2 weeks with the advair I could barely make it from bed to the bathroom I was so short of breath. As soon as I stopped the advair I was better. The same way with the asmanex.

My question is. What other choices are there? My Pulmonologist doesn't seem to have any answers for me.
I'm ready to give up all meds and just stop breathing.
I can't take much more. 4 years is too long.
  

[Grailhunter]

I tell you how strange this is.  There is obviously some issue of asthma or COPD because if I don't use the Foradil and Atrovent at night, I can't sleep past 4 am, because the early morning air will wake me up breathing to rapid to allow me to sleep, and I have to use the nebulizer first thing getting out of bed.  Also, hot air bothers me allot, but it does not make me breath faster or harder.  I breath faster and harder once I come in out of the hot air into air conditioning.

But, heres the weird part beyond whatever issue there is there of the lungs.  When I first started useing a nebulizer, where your supposed to take very slow and deep breaths, when I was done, I felt worse.  My chest felt so sore and tight from the deep breathing, I felt like I was breathing worse.  Now, 6 months down the road on working to get my chest opened up, the deep breathing from the nebulizer makes me feel more open instead.  Allot of times if I am feeling very tight and chest restricted, I can just lay down on my bed with my shoulders hanging over the edge and back bend with my arms laying back to the floor, and do some deep breathing, and my chest will open up, sometimes enough that I can then tolerate just sitting for a few hours without my chest bothering me and my breathing feeling restricted.

If happens to read these long post of mine and has similiar problems with allot of tightness, restriction and discomfort in the chest, rib, sternum, back, shoulder, neck and throat areas or combinations of this sort of thing, I would love to hear from you because like I said, I haven't found people with serious lung disorders that expressed these problems so far.  Basicaly what I hear from people I have talked to personaly is that there really aren't much in the way of those kinds of symptoms.

[Grailhunter]

I can't figure out if I am fighting hyperinflation or chest wall restriction.  I have read on a number of websites that if a person is seriously inactive for a long period of time the ribs, sternum, chest breathing muscles and surrounding tissues can become quite tight and rigid.  This is a preaty good description of me as I was disabled for another reason for about 6 years straight and did nothing but go back and forth from my computer to my bed to computer and so on.  So all I did for 6 years was very shallow breathing.  Against my Doctors advice I finaly got tired of dieing slowly and went out and started a whole lot of walking and deep breathing.  Not long after starting this I developed serious pain in the back, ribs, sternum, neck, collarbone.  I have been fighting with this now for about 6 months.  The back and chest pain is slowly disipateing.  The rib cage is feeling allot freer.  I can actualy push on the ribs and sternum now and they have some give.  For months they would not give.  I even seperated several ribs they were so tight at first.

I asked the Pulmonologist about this concept of being so inactive for so long that everything becomes chronicaly short and tight and makes breathing difficult and he said it was not possible, but I have read a whole bunch of pulmonary therapy pages that say its a reality.  I have also talked to allot of people with serious lung problems and I have not found one yet that describes back, rib cage, sternum, neck and shoulder restrictions and pain as part of their problem.

Beats me.  Its just preaty strange to me that I can go and swim laps in the apartment pool and feel like I have as much air and breath no harder then I ever have, yet sitting here typeing this letter at my computer I am feeling a restriction in my breathing.

Thats what is strange about the whole thing.  My breathing feels restricted driving, sitting, or just standing, or slowly walking around, yet I can swim, walk at a fast pace, or climb a hill and it feels as open and normal as it ever has.  

[japdip]

With COPD (which includes several disease possibilities) there is Hyperinflation of the lungs which does sound like what you describe.

[Grailhunter]

I felt I should clarify what I mean by labored breathing.  I don't mean I am breathing faster or feel short of air.  It feels like the lungs are tight and requireing allot of muscle strength to get the air in.  I can still pull in a deep breath, but it takes allot of muscle strength to do it.  When it is quite bad and I use a rescue inhaler it feels like a strong pressure is pushing on my chest and throat to exhale while I struggle to hold the inhalent in long enough.  I often feel like I am useing so much muscle energy to breath, that the muscles are getting tired and tight.  I feel like I am dealing with two different things on this if it makes any sense, the first being frequently tight lungs that are reacting and the second thing being weak and tight breathing muscles from having to deal with this condition.  And I sort of feel like this is why my PFT's show no problem, because even when I feel completely worn out and my breathing feels very difficult, I can still overcome whatever the problem is well enough to produce good results on a best effort.