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  #1  
Old 04-19-2006, 12:45 AM
Skott Skott is offline
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If not asthma, then what?

As I mentioned in a previous thread, about nine months ago, my asthma went from an occasional nucance to an active daily problem. My PCP and I have been trying to find out what the problem is and what can solve it. So far, no medications have helped and I've tried a lot. I recently saw an allergist and a few days ago a pulmonologist. No allergies were revealed and the prilimanry PFT actually showed that my breathing was completely normal and showed no signs of asthma. Both specialists are of the opinion that I don't have asthma (although they prescribed medication for asthma), but do not know what causes the problems I've been having. I have to say I've been disappointed with the helpfulness of both; frankly, they seem to either dismiss some of what I've told them, flat out don't believe me, or won't listen to what I try and communicate; the only good thing so far is that the pulmonologist gave me a peak/flow meter to help me try and track down what was causing my problems. So I was wondering if anyone here might feel my problems sound familiar.

My main symptom is painful and difficult breathing after doing mild (usually constant) activities for more than five minutes (intense exercise doesn't seem to cause a problem, which I find odd, but no doctor has commented on), but it's not consistent. The only activities that seem to consistently trigger this pain is when I'm looking nearly straight down. For example, when I cook, do dishes, or mow the lawn; one time just looking straight down into a bargin bin (at waist level) at the mall did it, another reading a magazine in my lap in a uncomfortable chair did it. However, it happens at other times as well.

The pain is in my lungs... if I made two fists and put them an inch to either side of my sternum, that would be the area where the pain exists and it's a constrictive pain. Since my PCP had told me a horror story about a friend of his whose daughter died because she didn't use her inhaler while rollerblading and since my rescue inhaler seemes to have no effect since these new problems started, whenever the pain would strike, I'd immediately sit down and try and recover; in about fifteen minutes I'd be okay. Drinking a large amount of cold liquid would help decrease the pain in my lungs at least temporarily, which always confused me. Tilting my head back and putting my arms over my head can help ease my breathing discomfort.

Since getting the peak/flow monitor, however, I've discovered that my breathing capacity and the times that I get pain in my lungs do not seem to be connected. My average is 533.5 liters per minute (although from what I've read, a 72" tall 32 year old male should average at 650?) and even when my pain and breathing discomfort is high, I can still get a reading between 525 and 550. In fact, the only time I had a reading below the 80% range (at least according to this "My Peak Flow" program I'm using) was when I measured it one time within a few minutes of waking up (usually, needing to take care of my baby prevents that).

So as you can tell I'm a bit confused and all my doctors are kinda puzzled as well. If you can help me shed any light into this, I'm be very grateful. I could even put up a link to xrays of my lungs and the reports if it'd help!
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  #2  
Old 04-19-2006, 01:06 AM
ZeroZero ZeroZero is offline
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As a person that suddenly got asthma when I was 27 I can tell you, it's a tricky thing and you might have to see more than one doctor.

In fact in my case I was so bad with asthma there were times when I had to cross Michigan Avenue in Chicago I had to literally rest on the median strip, cause I couldn't make it across the whole road.

I had a slight high blood pressure and my doctor said running would bring it down. It was like 129/65. It was just the top number. Anyway the shocking thing was it didn't help my blood pressure but the running has virtually eliminated my asthma. This is due to the fact they use adrenaline to stop bad asthma attacks and by running I am increasing my own adrenaline so that could be why streneous activies don't bother you.

So you may have to work with another doctor

Here's one thing I can tell you. If you are on oral steriods your asthma should be much improved. If the steroids do NOT work for you (and it's not a good idea to be on them long term if you can avoid it) you probably (but not definately) do not have asthma. Cause the steroids usually almost always help.

Allergies can cause it to. I lived in Florida and I would get the worst hives ever. In fact I got them so bad my eyes would swell and it look like I got punched in the eye. My lips would be like the "ubangi" lips to use a non politically correct term. I got sent to both Johns Hopkins and the Mayo Clinic. Everytime I went north the allergies stopped. They never found anything I tested postive for the allergies. Finally the doc at Mayo said "you live next to the Everglads, we may never find out what it is, my suggestion is move. So I did, it never came back."

So I had a lot of issues with these, and sometimes they do not know, sometimes it just goes away, and sometimes you have to go to a LOT of doctors. The best thing to do is start out with what it COULD be and eliminate them one by one.

I compile statistics for a medical research university and one thing they have found (though very rare) is have you been in contact with anyone who has been out of the nation. I say this because someone we had in our hospital was married to a man who came back from Africa and he somehow gave her a form of Lassa Fever, and he was apparently carrying antibodies but virus didn't affect him. And the woman died. This was like 5 years ago.

Not that this is your case, but what I'm saying is because she never mentioned she had been in contact with someone in Africa they never thought to look for Lassa Fever till it was too late.

So think of things like that. Have you swallowed anything? Could someone be trying to poison you? Don't laugh. We have had a wife give her husband small traces of arsenic. She was arrested.

Did you change any medications? Are you using your rescue inhaler correctly. A rare but true condition is a paradoxical lung spasm. You can actually overuse the inhaler and cause it to get worse. I have also seen people that haven't a clue on how to use it.
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  #3  
Old 04-19-2006, 01:17 AM
Zabali_Clawbane Zabali_Clawbane is offline
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Have you considered going to a neurologist as well? I hazard a guess that the part about looking down triggering it might be answerable by a neurologist. See if you can get a doctor to try to duplicate what goes on so they can see it for themselves.
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  #4  
Old 04-19-2006, 02:35 AM
cerberus cerberus is offline
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Respiratory Infection?

Tuberculosis?

Chronic Obstructive Pulmonary Disease (COPD)?

Lung Cancer?

Pneumonia?

Pulmonary Hypertension?

It might simply be (very poorly) controlled asthma...

Is your primary actually a Pulmonologist? Have you seen a second Pulmonologist?

You might have a new trigger in play that you are not controlling. An immunologist might help you identify such a trigger.

You may need to change/rotate your meds.
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  #5  
Old 04-19-2006, 12:57 PM
indecisive1 indecisive1 is offline
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Bump.

I'm sorry I don't have any ideas for you skott. I'm having endless trouble with asthma and am interested in the subject. I hope to hear from more Dopers with lung problems.
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  #6  
Old 04-19-2006, 01:13 PM
Qadgop the Mercotan Qadgop the Mercotan is offline
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What's your personal best peak flow reading when you're feeling fine?

have you had a methacholine challenge test?
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  #7  
Old 04-19-2006, 03:23 PM
Skott Skott is offline
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Thanks, indecisive1, I'm glad there's an interest.

Quote:
Originally Posted by ZeroZero
Here's one thing I can tell you. If you are on oral steriods your asthma should be much improved. If the steroids do NOT work for you (and it's not a good idea to be on them long term if you can avoid it) you probably (but not definately) do not have asthma. Cause the steroids usually almost always help.
Well, I know I had asthma at one point; I was diagnosed about six years ago with very mild asthma, i.e. I would need a puff of albuterol before doing some heavy exercise. It worked, too, I could feel it. Over time, though, I started needing two doses to achieve the same effect though. And then, nine months ago when my problems took a turn for a worse, they stopped working altogether... at least for the new chest and breathing problems I was having. Which, as you say, adds more evidence to the idea that this is not asthma.

One thing I should explain is that at the time, three main things were happening in my life:
  1. My daughter had been born a month earlier
  2. My roommate had moved out, giving access to her room for the first time in over a year
  3. I installed two dual-paned windows in said room
It was while installing the windows that things took a turn for the worse. I had already installed four windows over the previous year and a half, and I could go for a few hours without needing a rest. While working on these, however, it kinda got down to where I could only work for like five minutes before I needed a literal breather.

We've thought that maybe the extra-insulated windows had begun to trap more moisture in the house, increasing the mold count, so we got a humidifier. Doesn't seem to have helped, plus I'm not allergic to mold as I found out. Nor dust mites, that might have been left by my former roommate (we cleaned her room pretty thoroughly after she moved out, since it became the nursery). As I mentioned in the other thread, we use all hyper-allergenic stuff (including cornstarch for babypowder), but we've decided to stop the diaper service for a month just to be sure.

Also, something I mentioned in the other thread, there were two seperate occassions when my chest pains/breathing problems went away altogether:
  • The first time my daughter (and my wife/her mother) went to visit her parents; while I was all alone in the house, I kept the nursery door shut. (However, the second time this happened, I didn't feel any better.)
  • When on a two day trip to Monteray Bay. Other trips, including one to Lake Tahoe, didn't help though.
Quote:
So think of things like that. Have you swallowed anything? Could someone be trying to poison you? Did you change any medications? Are you using your rescue inhaler correctly. A rare but true condition is a paradoxical lung spasm. You can actually overuse the inhaler and cause it to get worse. I have also seen people that haven't a clue on how to use it.
Well, I do all the cooking, so unless I'm subconsciously trying to poison myself, I doubt my wife has it in for me I might have inhaled some fiberglass fibers while working on the windows, but very few at most; I usually had my dust mask on. The only new meds are the ones for the chest/breathing problems that started. I'm pretty good at using inhalers, and my doctor had upped my dose to two puffs twice a day, so I think everything is good there.

Zabali_Clawbane, I have a neurologist, but that's primarily for epilepsy (great combo, huh?), so I would need to get authorization from my PCP before being able to see him for this problem.

cerberus, from what I understand, all of those have been ruled out from my x-rays and other observations. I currently have four doctors: my PCP (general family doctor), my neurologist (for the epilepsy), my allergist (same thing as an immunologist, right? his tests showed no allergies and his impression is that I don't have asthma), and now my pulmonologist. I may consider seeing another, more personable one, if my followup in a month yeilds no real results.

Quote:
Originally Posted by Qadgop the Mercotan
What's your personal best peak flow reading when you're feeling fine?
My personal best is 600, but so far that was only once. Usually they're about 550.
Quote:
have you had a methacholine challenge test?
I don't think so, since I'm not sure what one is...
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  #8  
Old 04-19-2006, 07:20 PM
Qadgop the Mercotan Qadgop the Mercotan is offline
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[quote]
Quote:
Originally Posted by Qadgop the Mercotan}
What's your personal best peak flow reading when you're feeling fine?
have you had a methacholine challenge test? [/quote
My personal best is 600, but so far that was only once. Usually they're about 550.
I don't think so, since I'm not sure what one is...
If your peak flows don't drop off from your normal when you have symptoms, that makes asthma pretty unlikely.

And a methacholine challenge test is a test where methacholine is inhaled, and if one is asthmatic, it will trigger bronchospasm, which is then seen on pulmonary function tests. But if your peak flows stay normal with symptoms, and your allergist and pulmonologist both say you don't have asthma, I wouldn't be eager to order such a test.

Sorry, I got nothing as far as what your diagnosis is. Sounds like you're in the hands of specialists who ought to be your best resource. Good luck.
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  #9  
Old 04-19-2006, 09:27 PM
cerberus cerberus is offline
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A few more possibilities:

Sarcoidosis

From this public domain/government website:

Quote:
Lung Symptoms
Shortness of breath
A dry cough that doesn't bring up phlegm (flem), or mucus
Wheezing
Pain in the middle of your chest that gets worse when you breathe deeply or cough (rare).
COPD

Quote:
Cough
Sputum (mucus) production
Shortness of breath, especially with exercise
Wheezing (a whistling or squeaky sound when you breathe)
Chest tightness

A cough that doesn't go away and coughing up lots of mucus are common signs of COPD.
It could be an adverse event from a mediaction or medications
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  #10  
Old 04-19-2006, 10:05 PM
Qadgop the Mercotan Qadgop the Mercotan is offline
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I'd suspect sarcoid and COPD both would have shown up in the tests already done. They're not rare, and no allergist or pulmonologist worth his salt will miss them. Hell, I'm a family medicine doc, and I diagnose that stuff all the time.
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  #11  
Old 04-20-2006, 12:37 AM
KarlGauss KarlGauss is offline
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cerberus: From the content of your posts, I'm sure you're not a doctor. Qadgop, being the gentleman he is, has declined to ask you WTF you are trying to do in this thread. But I have no such qualms and even if this is GQ where we're supposed to be civil, I can't sit quietly and let your speculations (and I am being kind to refer to them simply as 'speculations') go unchallenged. I mean, really, WTF do "TB", "pneumonia", "pulmonary hypertension" have to do with Skott's symptoms and story? And "COPD"? "Lung cancer?"

Listen, I'm not trying to be a jerk, or a put down artist. In fact, I don't think I've ever before admonished someone on the SDMB to 'knock it off' with the medical stuff if-you-don't-know-what-you're-talking-about (and, boy, have there been some howlers ...). But really, you are doing nobody a favor with your suggestions and, frankly, you may be needlessly frightening or misleading others who aren't familiar with the area.

Now, Skott for my (mostly non-medical) advice?

1. You should take some solace in knowing that whatever is causing your symptoms, it is not associated with depressed or abnormal lung function despite the subjective sense that the problem originates there. Further, whatever the true cause and source of your symptoms, (I assume that) you're doing well otherwise. The symptoms haven't killed you, or made you pass out, etc. Maybe, then, it's best just to try to live with it knowing that whatever is causing it, it's not taking a toll on your body. (I know that's easy for me to say, but, there may not be another good option).

2. If you still wish to pursue things, I would wonder whether the facts that a) all your pulmonary studies are now normal and b) the uncomfortable sensation is brought on by looking down, are telling us that the underlying problem is originating from the musculoskeletal system. So, when you flex your neck forward you may be straining or irritating something that causes the discomfort. Could be something in the neck, the rib cage, the muscles of the torso, etc., etc., (a zillion things, all benign). If this is the case, I'm not even sure who could help you or how. Maybe a physiotherapist. But, I'm getting waaaaay ahead of myself.

Good luck!
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  #12  
Old 04-20-2006, 05:47 AM
irishgirl irishgirl is offline
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IANAD

This is a little out there- have you had a chest CT?

Since your symtoms seem worse when you look down...I'm wondering about some sort of mediastinal mass, like a retrosternal goitre.

Sometimes (usually benign) masses there can cause shortness of breath, and you seem to be talking about pressure high up on either side of your sternum.

Sometimes pregnancy and childbirth can cause an inflammation of the thyroid, which, if it extends beneath the sternum can cause shortness of breath.

I know, it's weird, wacky and highly unlikely that someone wouldn't have thought of it already, I'm just throwing it out there.
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  #13  
Old 04-20-2006, 03:21 PM
Skott Skott is offline
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Quote:
Originally Posted by KarlGauss
Further, whatever the true cause and source of your symptoms, (I assume that) you're doing well otherwise. The symptoms haven't killed you, or made you pass out, etc. Maybe, then, it's best just to try to live with it knowing that whatever is causing it, it's not taking a toll on your body.
Well, I mean I'm not dying or passing out on a regular basis, but it has kept my from participating in life fully. When I say I have problems doing dishes and cooking, that's just to illustrate how much these problems have interfered in my life. I'm a stay-at-home dad and sometimes simply holding my baby will trigger an attack of whatever this is. For the past nine months, I've been basically not doing anything for more than five minutes, and not just things where I'm looking down area. People who can control their asthma, so I've been told, can lead a regular life, even participating in the olympics or being star football players; I can't and I am so very frustrated with it. I feel almost like an invalid. I'm afraid I really can't live with these symptoms and continue to be a father, a husband, a handyman (the house we bought together is a fixer-upper), and a gardner. There's no way I want my wife to have to take over these duties for me, either; we already decided that since my complex partial seizures went away after I got laid off that she would be the sole breadwinner. I can't ask her to take on these other duties as well.

Quote:
So, when you flex your neck forward you may be straining or irritating something that causes the discomfort. Could be something in the neck, the rib cage, the muscles of the torso, etc., etc., (a zillion things, all benign). If this is the case, I'm not even sure who could help you or how.
You raise an interesting issue. I have noticed that sometimes when I am having an attack, there is a pain in my spine, in roughly the same area where the pain in my lungs is occurring. But like you said, I wouldn't even know who to go to for something like that. Besides, my chest x-rays are "unremarkable".

irishgirl, by a "chest CT" do you mean a CAT scan? I haven't had one, but I'm thinking I'd like to get one.

Someone I recently talked to brought up the issue of GERD and has made me wonder. I mean, could the pain in my chest actually be stomach acid entering my lungs? Could the reason that a cold liquid eases the pain (temporarily) is that it washes the acid back down my esophogus? I don't, however, notice any feelings of heartburn or taste any of it in the back of my throat so...

I forgot to mention one thing: The pulmonologist wants me to take a sleep apnea test, but mainly, if I understood him correctly, for the lack of energy I feel throughout the day, which I had (incorrectly) attributed to a lowered level of oxygen intake.
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  #14  
Old 04-20-2006, 03:57 PM
Skott Skott is offline
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Hiatal hernia?

While checking out the GERD link I provided above, I saw something that cought my eye: Hiatal hernia, one of the symptoms is acid reflux. The main thing that caught my eye is the "causes":
  • Obesity - I guess technically I'm obese at 210-215 lbs when I should be at around 180
  • Poor seating posture - I have a tendency to recline against the edge of the couch while using the laptop
  • Frequent coughing - For the past 15 years or so, I've had problems getting rid of a cough after getting a cold. The cough would linger on for months (like it is now)
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