[setApart]

Off I go to the ER for Short. of breath and pleurisy. They did a chest xray/blood work/EKG said nothing was abnormal. The oxygen they had me on helped while I had it on, ER Dr suggested I might have interstitial lung disease as I have a problem walking withough getting SOB, but since all my tests were normal so he couldn't admit me for further oberservation(?) so he gave me IV steroids which seemed to help some and then sent me home with medrol-dose pak. My neck has also been hurting which he said it was probably from trying to breathe hard as my O2 sats were at 100% which was good.

Does anyone have ILD? I have asthma already take Advair 500mg 2xd and Xoponex 2xd and they are getting to where they are not helping much. :sad:

 

[Katharine]

Hi,

I was suspected as having either ILD or problems due to weak lung and other muscles (myositis).

The ILD doesn't seem to be the cause, or, if it is, it has not caused any significant scarring on my lungs which is GREAT!

A normal x-ray is not sufficient to show up ILD. You need to have a CAT scan done. Mine was done both with and without contrasting product.

If it is ILD the steroids are as my lung man said "the best medecine". There are aternatives but to get the problem under short term control that should do the trick. I have been better since increasing my pred and can now walk without getting short of breath though running is out of the question (not just because of that :lol.

When I had my attacks I couldn't breathe even sat down so right now I'm kind of resigned to having to stay on pred.

Sorry I can't help more, but it sounds like you need to make an appointment to see your pulmologist. Mine was glad I did even if the results are clear for now as he says he has something to compare future results with.

Katharine

 

[Katharine]

You might find this link useful BUT, I would not panic about it before being very sure that is what is wrong.

http://www.mayoclinic.com/health/interstitial-lung-disease/DS00592

Katharine

 

[setApart]

I saw my Rheumie yesterday who saw me gasping me for breath again as the depo-medrol dosepak hadn't kicked in yet and said "did your pulmon. dx you with asthma" yes "your not wheezing though" but I was very short of breath, so she gave me a steroid shot of 160mg told me to find another pulmon. because I told her the ER Dr said I might have ILD. and she ordered another chest xray. My question is why are they not getting a CT Scan wouldn't that be better??? I'm still SOB today but not like I was yesterday my lungs feel very restricted just wondering if this is how ILD feels? I did make an appt to a new Pulmon. but I can't get in until 7/31. :sad::sad::worried:

 

[Katharine]

Hi,

I would say that the first thing that new pulmologist should want is a CAT scan. Maybe you could get your doc to get one done beforehand (I don't know the system there - here GP's are free to do whatever they want basically)?

If he/she doesn't feel ok about that, is their any way they could phone the pulmologist and explain and possibly ask if it mightn't be an idea to get it done before the appointment. An x-ray is basically next to useless for suspected ILD.

I'm sorry you couldn't get in sooner I know how distressing it is when you can't breathe. I wasn't able to get any sleep at all when that was going on and even though I'm not a generally panicky person, I found it quite frightening.

hugs to you,
Katharine