*sigh*

[Zeta]

Well, my lip biopsy came back negative. That makes several negative ANA's, a negative SS-A and SS-B, and now a negative lip biopsy. As of now I have no explanation for my dry eyes and mouth, my aches and fatigue and my new found lung issues (had a pulmonary function test that showed mild lung RESTRICTION). I've been having lung symptoms for a while and have a test to prove that something is going on there but nothing else. That's it. WHAT ELSE COULD BE HAPPENING TO ME!? I'm so frustrated and I don't know what to do. Where do I go from here? My life has been torn apart by my illness and I have next to nothing to prove that its real and now I'm losing my lungs to this. What do I do? What am I supposed to do?

[Pooh]

Zeta, has your doctor said anything about Fibromyalgia?  Just a thought, I'm not a doctor just observing some of what my daughter goes through all the time. 

Take care dear and I hope you will get some results soon to tell you and your doctors how to treat you.

Hugs, Pooh

[Linda196]

Zeta, the other thing I wondered about (since Pooh mentioned fibro) is sarcoidosis, which could account for the mild lung restriction. It would quite often show up on chest x-ray if it's gone to the point of causing restriction, but it could be something to ask your doctor about. It also causes many of the same issues as SjS.

[Patze]

Hi Zeta,

Pooh beat me to it, I was also going to suggest Fibro - I also have it, but according to the rheumy, it'll go away once my sleeping cycle returns to normal.  As I've said before, he's such a silly man.   It's been 3+ years since I've slept normally and it doesn't look like it going to change any time soon.

Don't you just love Pulmonalogists?  Yeah, mine says that I've developed a mild case of asthma; he might have a point as I sometimes just can't breath right (the more exhausted I am, the worse it can get).

Oh, welcome to the sero negative crowd (and for some of us, that also includes the biopsies).  It's a pain in the behind, but I am waiting on something going positive, all these negative tests results is getting old.  I do feel your frustration, and I can't really offer you a timetable or even a direction at this time - I'm still trying to figure all that out and waiting for my body to do it's next trick. 

Hang in there and hopefully you won't have to wait to long.

Take care -

Patze

[Zeta]

Well, the problem is this. My internal med doc believes I have asthma but that's obstructive. My pft shows restriction. Look up restrictive lung disease/interstitial lung disease. You'll see that asthma is not one of them. Something is attacking my lungs and I either have inflammation, scarring or both. Restriction on a pft is NEVER good. And I'm scared.

[Patze]

Hi Zeta,

When do you have to see the pulmonalogist again?  What does he think is happening?  Is he talking about doing any other testing?  Did you also get to do a chest x-ray with the pft too?

I too did the pft and that was so much fun - NOT!  The worst part of it was the arterial blood gas draw, I don't know about you, but that was the most painful thing I've experienced in years.  Yeah, he's talking about redoing the test in a year or two, ugh.

Hang in there and keep us updated, okay?

Take care -

Patze

[ktfabian]

Hi Zeta-

Honey, if you're scared - call the doctor now.  Don't wait for your next appointment.  Just explain to whoever takes his/her messages the issues you've explained to us that are frightening you and ask that he call you back.  No one should have to wait in fear about breathing issues!

I'm another fibromyalgia sufferer and at times my chest gets achey - more like overtired, sore muscles, not trouble breathing.  Fibromyalgia may be adding to you difficulties, but I really think you should talk to your pulminologist right away and get your fears taken care of - you deserve that!

Take care and I hope you get good answers right away,
Tracy

[Zeta]

I refuse to believe that I have fibromyalgia since my symptoms respond to steroids. Thats not characteristic of fibromyalgia. And fibromyalgia wouldn't be causing me to have those abnormal readings on my pft. I'm actually beginning to look at lyme as a possibility. Yes, I'm that crazy now.