View Full Version : Update after appointment
03-22-2011, 04:47 PM
So they gave me a new medicine to help me sleep better since I haven't been sleeping well at all on 30mg of my Flexeril. Really hoping it helps. She is running tests on my thyroid and says I should be able to call in a few days to get the results. And I knew they saw something on my CT =( she isn't sure what to make of it just yet because there weren't a lot of spots and she said the medicine I'm on should be making them better. She said its some lung problem that is really uncommon especially in lupus and more common in scleroderma (there's that mentioned again). Her description was "broken glass" spots on my lungs. I dont really know what that means, but she said even before I came in today she started talking to a pulmonologist and is making me an appointment with them. She is also taking my scans to a conference to have them looked at to see if its something we should be more concerned with. Little bit more stressed now, and any stress at all makes me feel like my body is in overdrive. Anyone else had this lung problem she was describing to me?
03-22-2011, 06:30 PM
it is hard not having the answers right away.
but your doctor does appear to be trying to help.
it am thinking of you always.
rest and enjoy the break, school can wait.
03-22-2011, 06:51 PM
Steve is right, it's hard to wait for the answers. But at this point I think you have to. There is a prayer some of us quote. So whether you think of it as a prayer or not. Remember these facts
grant me the strength to change what I can change
and the patience to accept what I can't change.
What I'm trying to say is that we all need to practice patience.
Whether it's waiting for a diagnosis or answers to what's wrong with me.
03-22-2011, 07:15 PM
I just don't know what to think about the stuff in my lungs...
03-22-2011, 07:52 PM
That's why you need to learn patience, the answers don't always come immediately, your doc wants to be though, and that takes time, I know it's hard to do, it's hard even for me after all these years
HUGS Ritz Bits. Hugs
03-22-2011, 07:52 PM
I have had a few blood clots in my lungs over the last few years and everytime I have a CT they say I have ground glass spots (which I think might be the same as your broken glass) in my left lung. I have asked my respirologist about this and he says my lungs are scared from the lack of blood going to diffrent spots during a clot. So make sure you ask the next time you see your doc what she means. There could be many causes...
03-22-2011, 08:05 PM
They said last week they didnt see any clots. She said the same thing with the glass spots, I just said it different. lol She said people with lupus rarely have this problem, but people with scleroderma have it more? She said in general its an uncommon problem.
03-22-2011, 08:18 PM
Glad to hear you have no clots!! Doesn't surprise me that I would have something uncommon (seems everything I have is uncommon) Do you have scleroderma? I've heard of it, but don't really know what it is. I hope your lungs get better. My lungs have been messed up for a few years. It hurts to breath and when I get a cold it always go's into my lungs. Seems like were always fighting something!!
Thinking of you
03-22-2011, 08:23 PM
I was very happy to hear that also lol I don't have scleroderma but my doctor has said something about it twice now when talking about my lung problems. I'm hoping I get some answers soon. I've been having issues for months and was told I was just out of shape. Out of shape my butt! I'm not in the best shape but normal 18 year olds can walk to the bathroom without being out of breath. I'm just glad my doctors listening to me now.
03-23-2011, 07:18 AM
Yes, I have something like that. I have Sarcoidosis. It's an Interstitial Lung Disease and an AI disease. That's just a big fancy term for lung disease in the tissue and space around the air sacs in your lungs. There are several subdiseases listed in that title, including Sarcoidosis, and several causes listed for those diseases, including SLE. When you go to the pulmonologist, they will probably run a pulmonary function test on you. You have to sit in this contraption that looks like an old fashioned phone booth and they plug your nose with a pin and make you breathe through a tube to measure the amount of air going in and out of your lungs in relation to the capicity your lungs have to push air in and out. It's super simple and takes all of 5 minutes. They might also draw some more blood work and may send you for a CT scan (I think you said you had an xray but not a CT scan before) and maybe a PET scan. I never had the PET scan since the xray and CT were conclusive with me but the CT scan is easy too. If they have you go for that it'll probably be with contrast - a dye injected by iv - unless you are allergic to iodine or shellfish and then no contrast. The test is also about 5 minutes. After that they will decide what to do next. They may chose to go the biopsy route or to do some more skin/blood test. It all depends on which direction the previous tests lead them in.
03-23-2011, 07:43 AM
I did a PFT about a year ago and it was terrible. I couldn't do it at all and got light headed from having to do it over and over and over until I did it "right". I like how when you don't do things like that well they send the "good" results not the twenty that you couldn't do. It is seriously my least favorite test out of all the things I've had to do in the past few years. My rheumy told me I'll probably have to do it again too =( not looking forward to it. The CT is where they found the spots. I had an xray done 2 years ago but wasn't having many lung issues then.
03-23-2011, 12:32 PM
Doctor just called and my thyroid looks fine so now she wants me to come in tomorrow for another ECHO and EKG to check my heart while everything is acting up with it. We just did an ECHO in December but I've never had an EKG before. She said she's making sure there isn't fluid around my heart? She said we'll probably get the results right away so after I get that done she wants me to wait around and then see her to talk about what if anything is found. I feel like I'm doing a lot of tests and finding almost nothing =/
03-23-2011, 12:45 PM
not nothing. normalness. normalness isn't nothing. It's a baseline reading for whatever may happen down the road to measure abnormalness against. take heart, you are so far along in your journey and only have a short way longer to go.
btw- these are tests that they did with me and the Echo and EEG and Halter came back normal too.
03-23-2011, 12:52 PM
This will be the 3rd ECHO I've had in a year. I'd like to know why my heart rate is stuck up in the 160s. And I wanna know more about this lung business too but I haven't gotten an appointment made yet.
03-23-2011, 05:39 PM
ritzbits - a co-worker of mine has scleroderma. She also has another disease so I don't know what all is related to which. I do know that they are related and that when she was diagnosed, she complained of incredible fatigue, a fast heart rate with very little activity and being out of breath. Some of these are in common with your complaints. Try not to worry though I know taht is impossible. Until you get firm answers, there is much you can do...just keep asking the questions and looking for answers. Hugs.
03-23-2011, 05:52 PM
I don't even know if my doctor is suggesting that as a possibility she has just mentioned it a few times. I know that it would make sense if that was what was causing things. While looking up some information on it I found out that for alot of people Raynauds is the first sign, which was what lead me to a Rheumatologist in the first place. Who knows. Nothing suprises me anymore lol I think I'll know more once I get an appointment with the pulmonologist or maybe this test tomorrow will show something. I'm trying to keep calm because it makes my heart rate go even more crazy.
03-24-2011, 10:57 AM
I'm glad that they didn't find any clots in your lungs! I hope that today's tests tell them something. I hope that they can pin down what is hurting you so much and start treating it correctly. At least they are trying now!
Keep us informed, sweetie!
03-24-2011, 12:25 PM
Both the ECHO and EKG were normal. So now we just wait for the appointment with the pulmonologist I guess.
03-24-2011, 12:32 PM
This is all making the Scleroderma sound like a real possibility, isn't it?
Hang in there, sweetie!
03-24-2011, 12:42 PM
Would that have anything to do with a high heart rate? She said that 160s is bad but that nothing bad will happen from it. But I feel SO TIRED when I get up to do stuff and it gets that high. I feel like simple things are a work out.
03-24-2011, 12:46 PM
That's what Bunny mentioned when she answered you.
I also have a friend who has it. She used to take MTX for it, but hers went into remission and she's doing very well now.
03-24-2011, 12:48 PM
I'm on a lot of medicine right now. You'd think SOMETHING would be helping it wouldn't you? Who knows. Maybe it'll start to get better? I hope so.