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Discouraged maybe, but not defeated 11/9/09

Nov 09, 2009 - 4 comments

I have been trying to get to the bottom of my breathing problems and still have not made much head way.  I want to give up and just accept things are always going to be this way, but then out of nowhere the urge to keep digging for answers comes back.

I developed mild asthma about 6 years ago.  I never had an asthma attack for wheezing or any of the usual asthma connected symptoms, but they still diagnosed me with asthma becaue I had a positive reaction to methocholene, a drug they use for testing for asthma.  The lung doctor put me on one asthma drug after another and the result with all of them is that they helped but only with marginal improvement.  The only thing that has really helped was steroids and they only helped while I was on them.  So 3 years ago my lung doc and I had a conversation about continuing asthma meds.  I stopped them and nothing dramatic happened.  I noticed my breathing was getting a little worse over time, but nothing dramatic.

So, last June I had a full pulmonary function test and that showed a dramatic and significant decrease in lung function.  Another test a month ago showed a further decrease.  A lung doctor I saw, someone new to me, sent me to a neuro to see if it was a a neuromuscular probelm.  He concluded that the breathing problems were MS related even though my MS neuro said that it wasn't MS and to dig deeper.  I have now been sent back to my lung doctor for her to figure out and well, we can't see to talk to each other because of playing the ol phone tag game.  

I am most discouraged right now that I can't even get a simple flu shot noneless the H1N1 vaccination.  I am discouraged about not knowing what is at the root of this problem.  But I am not feeling defeated.  I will keep plugging away to find the answer and more importantly some type of treatment that will help get things back under control.

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by Quixotic1, Nov 09, 2009
Wow, Julie, how awful!  We really take breathing for granted.  It is definitely NOT overrated.

Did your pulmonary function tests show a restrictive or an obstructive pattern?  Do you have more problems with filling your lungs or with blowing the air out?  Any lung disease in the family?

Being that end-stage MS (which I realize you are NOT at) is often characterized by pulmonary failure because of weakened musculature, I don't understand why this "can't" be MS related.  Things happen in MS when they happen.

Are you hypoxic?  Do you cough?  Do you have chest pain?  Are you short of breath at rest or just with activity?  Do you have increasing exercise intolerance?

The fact that steroids inprove the problem seem to indicate an underlying inflammatory problem.

Has your ticker been thoroughly checked out?  Sometimes a cardiac problem will manifest as a pulmonary one and vice versa.

It's really not my field - That's what I used my pulmonary experts for.

But, I have to try to think about it.  I want you to be better!


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by rendean, Nov 09, 2009
Hi Julie,

Sorry to hear about the pulmonary difficulties and the medical runaround. I got a taste of that with my vertigo issue.

I'm very pleased that you are not defeated!! We all get discouraged and some give up, you just don't seem like the kind that would accept defeat.

Quix posted many excellent questions and thoughts. Perhaps one of her thoughts/questions will lead to an answer.

Keeping you in my thoughts,


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by Sarahsmom46, Nov 09, 2009
Thanks so much for your comments Quix and Ren.  The questions are very well stated and somehting I have talked with the lung doc about already.  She wasn't satisied with my cardio work up and dissapointed with the MDA neuro's scnat eval.  She is thinking about a weak diaphragm and probably that is the next step.  

The PFTs were restrictive, moderatly severe at my last result.  I can't sleep lying down.  The recliner has become my best place to sleep most nights.  Exercise intolerance, geez, that was pretty well demonstrated on my CPET and the stress echo test.  But, the cardiologist and lung doc at the time wrote up the report saying it was likely due to deconditioning.  At the time I thought there could be some truth in that so I got on an exercise and diet plan and lost weight and got a little more strength in my muscles, but my exercise tolerance didn't improve all that much.  

This has been a frustrating situation, but now I have a new lung doctor who seems to be a go getter and so maybe I need to be a patient patient and let her do her job.  I have been a very, very compliant patient taking my meds exactly as prescribed so I know I have done my part.  That is the best I can do for myself right now and of course hope and pray that we will find something that works.  

Thanks again you guys are good sounding boards and even better friends.  

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by saveone, Nov 10, 2009
Julie I am really sorry you are experiencing this.  I imagine it is frightening to say the least, esp with the not knowing.  In an effort to find the cause of my fatigue I had  the lung function testing.  It came back within normal limits.  My x-ray came back as showing my lungs hyper-inflated, possible stage one COPD.

I tell you this not to say, hey look I have problems too, but to say it frightened me enough that I have not smoked in 3 months.  That means I am not underestimating the psychological effects that decreased lung function can cause.

I know you are strong and that you will continue to look for the answer.  I am very glad you have a new doctor that you feel is working for you, not against you.  I will keep you in my prayers.  If you ever need to talk I am here just a comp screen away.  You have always been so supportive to me, I would like to return the favor.

Please forgive me if this sounds disjointed, it probably is ;0)  It is just one of the

take care,  terry

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