Welcome !

[Guest guest]

,

As Walt said, we're sorry you have reason to be here but happy you found us. I have fibrotic NSIP along with undifferentiated connective tissue disease. Your symptoms, the splitting skin on your fingers, weakness in your arms etc sound oh so familiar to me. I had a rash on my hands, peeling, callousing, splitting, itching horrible rash prior to my diagnosis with NSIP. When I was hospitalized in 2006 and diagnosed, I was in such dire condition that the rash didn't register on anyones radar (including mine) and then I was put on prednisone immediately and it vanished.

It came back several months after being weaned off prednisone and my new doctors at Duke have come to the conclusion that I have an auto immune connective tissue disease which in all likliehood is what caused my lung disease.

As for the coughing, prior to my diagnosis I frequently coughed until I threw up. I remember having to pull my car to the side of the road when I was on my way to work in the morning and choking and gagging and finally throwing up. Then, dummy that I was I continued on my way to work. I shudder to think of what I was doing to myself back then. Now, my disease seems to be stable and while I still cough, it's not even close to the intensity it was back then.

And finally I think you'll find that most of us have had our share of weird noises coming from our lungs. It's part of the deal and can be quite entertaining or embarrassing depending on the situation.

You don't say where you live but you might want to think about (if you haven't already) getting yourself to a university medical center where they have doctors who specialize in interstitial lung disease. The average community based pulmonologist just doesn't see that much fibrosis, it's worth the effort to get to someone who sees alot of us and has access to the most up to date information and research.

Again, welcome to the group. I hope you find as much support and friendship here as I have!

Beth

Age 48 Fibrotic NSIP 06/06 UCTD 07/08

Change everything. Love and Forgive

Introduction and Question

Hi, My name is and I have been tentatively diagnosed with IPF or NSIP (with a "touch" of IPF), depending on where the dart lands. Still trying to figure things out, actually, do we ever figure things out? So, I have a couple questions. Not sure of the correct procedure. So here goes; I have recently begun to experience skin splitting on my fingertips and was wondering if this is another side effect of IPF. Does anyone have loss of strength in their arms, hands more specifically? Do your joints hurt? Do you cough so much that you gag and start to throw up? Do you frequently sound like a squeak toy? (That's what my oldest daughter jokingly calls me, to get me to smile)Thank You,