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Old 06-17-2007, 06:47 PM   #31
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Re: How common is it?

Thanks SeaJay for the reply? Did they ever test you for Sarcoid? There is a blood test that is about 75% accurate in diagnosing Saecoid. It is called the ACE test. Also, if one is anemic...this can also cause shortness of breath. I am under the care of an Endocrinologist and I asked for the ACE test and he said that wa snot his dept. I was upset by that statement as my veins are poor and getting blood from me is hard. The Endo doc is one at a large hospital and he is so busy that you cannot see him unless he is referred and then you wait 4-6 months and it takes them forever to return calls as all you get is a recording whne calling their office. I am very low in Vitamin D and they are trying to find out why. I too do not stay on the phone long. After eating I feel worse. Laying down is not so bad but moving around makes my breathing worse.

I hope they find what is wrong with you and that it is not serious.

Macie

 
Old 06-28-2007, 04:52 PM   #32
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Re: How common is it?

Macie,

I just remembered your suggestion of the ACE test after I got back from my Pulmonologist. Boy, next time, I'm going to bring a list.

Dragonfly: I hope your feeling better these days.

Murphie: Same to you. I hope everything is looking up.

I had some chest pains waking me up for the last couple of weeks. Sharp ones in the lower chest, and then afterwards, the area would itch. Sounds crazy, I know. My right back just under the rib cage felt like it was bruised, only there was no impact and no bruise. So baffling. I just went to the Pulmonologist today and my lung function test came back nearly normal. I have been officially diagnosed with asthma, though it's not really bothering me at this time. The doctor attibuted the pains to pleurisy that is related to the pleural effusions I have in both lungs. I was sort of upset that the lab did not forward the films to the doctor as I had requested. So...all he had to look at was the report and he does prefer to see the images. He is ordering another CT in 3 months. He feels this is best instead of the 6 month review the radiologist reccomended. The stability in the nodules is very good he said, but the changes in the base of the lungs, though not alarming, need to be watched. If I the pain is elevated to a level of concern for me then he wants me to come in sooner.

A question for Macie and Murphy, does Sarcoid usually present with skin lesions? I looked up information on the internet and it shows that it's linked with skin problems. So many of these respiratory issues have the same symptoms. You could present with a list of 20 symptoms that are related, but those 20 symptoms can be linked to a list of 20 different respiratory illnesses. I guess it really is diagnosis by elimination.

 
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Old 06-29-2007, 07:25 AM   #33
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Re: How common is it?

Hi everyone! I am glad to hear that some of you are getting some good answers and good news!! Macie, I hope they will find out what is wrong soon.

I am feeling great. Haven't been able to get to the gym lately because I am studying for a big test for school...so I can tell my lung function is getting a tad worse. Nothing compared to what you ladies are going thru...but for me, it's noticeable. I have to really be on top of exercising to get my capacity back up to normal.

I also still have numbness all around my incision site. It's only been 5 months since my operation...so maybe it takes longer for the nerves to rebuild? It's weird, I'll get an itch on my back and I go to scratch it and can't feel anything. Very odd...I hate the feeling. Also, sometimes I get sharp pains where the under wire of my bra lays. I believe it's just the nerves reforming. Oh, and I also make this strange noise (kind of sounds like a manual bike pump...) when I take a deep breath in. My pulmonary doctor thought it was wheezing when he heard it before, but I have no asthma! It doesn't hurt or anything, it just wasn't there before the surgery. Anyhow, other than those little complaints, things are wonderful. I am just so thankful.

You are all in my thoughts!!

 
Old 06-29-2007, 01:28 PM   #34
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Re: How common is it?

Hello, everyone...

Seajay, I was sorry to read about all of the pains you've been having. I was having so many good days in a row and now those frustrating jabs and aches are back. Left chest, left upper back and those dang armpits!! Glad to know that your lung function came back 'nearly normal.' I'm noticing shortness of breath more often but, as I think I've probably said before, I have no clue anymore about what is 'real' and what is due to my anxiety! My scan is coming up next week and I wait here with bated breath...

As Macie asked, did your doctors ever mention Sarcoid to you? For what it's worth, my ACE test came back normal and I don't have any skin symptoms. Apparently, the skin lesions show up in about 40% of Sarcoidosis patients.

Are you being treated for the pleural effusions? More wait and see?

Hope you're having some good days too. Take care. Murphy.

 
Old 07-17-2007, 07:02 AM   #35
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Re: How common is it?

Hello all,

Murphy, I know your CT scan was scheduled for this month. Has it already been run or are you getting close? I know I'm on pins and needles when mine come close. As far as treating the effusions, it's just the wait and see stuff. I was told to take deep breaths when I get pain. Well, that kinda hurts too. I was also told to come in if it becomes of greater concern and have been contemplating it since the pains are becoming more consistant and there is this kind of gurgling I feel at the bottom of my ribcage when I bend. It sounds wierd, I know, and I was wondering if my explanation to the doctor would get one of those funny raised-ebrow responses. Sooo, I'm waiting. More important stuff is coming up with my oldest son next week which has a high level of concern.

Dragonfly, again I hope your recovery is speeding up. Soo much stuff for someone who is young, but it sounds like you are coming through with great insight and a positive attitude. Your input here has been such a help.

Off I go, it's time to run off and fight traffic to get to work. Take care all and Murphy, I hope your next findings are good news.

 
Old 07-19-2007, 09:08 PM   #36
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Re: How common is it?

Hi everyone...

Hey, Seajay...

Thanks for asking about me! My 2nd scan was earlier this month and I've been basically sitting here on pins and needles waiting for the phone to ring. I seem to have the 'worry' part of all of this down to a fine science! Anyway, I'm hoping no news is good news. My followup with the specialist is for next week but I am thinking that if anything had changed drastically for the worse, I would have heard from my GP. I'm feeling pretty much the same....some good days then some not-so-good days. I would just feel better if I felt better, you know? Keeping busy is key, but some days it's hard to do. If I sound like I'm feeling very sorry for myself, I sure don't mean to - I am doing so much better (emotionally, especially) than I was 5 months ago!

I keep meaning to say to you: I think it is just so great how many times you have taken the time to respond to people's posts at this site. Not just on this topic but on the others as well. Your compassion is truly amazing and you always seem to find the right words to say to people. I'm not a bit surprised that I was first drawn this board by your posts...

Hoping you're feeling okay - that 'gurgling feeling' sounds odd. Are you still getting that 'bruised' feeling in your back? You have a great way of describing some of my feelings too, except my 'bruised' feeling is under my side ribs. How about the armpit ache? Still there for you too?

I will post again after my next appointment. Take care. Murphy

 
Old 07-20-2007, 02:59 PM   #37
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Re: How common is it?

Thank you for your kind words. I'm sure glad you check back in here. If there were an ongoing thread earlier where people regularly checked in with the information on their lung nodules, I missed it, so I certainly appreciate your posts too.

I'm sorry that you are going through pains. Do you perhaps have pleurisy as a result of the other happenings in your lungs? I've been told that is what is causing my pain. (Sometimes, I think everything's a guess.) I don't have armpit pain at this time. That comes and goes. Now, it's just sharp pains several times a day, mostly in my lower chest, sometimes wrapping around my back...wierd stuff.

You know...you may be able to pick up a copy of your radiology report. I didn't think I was prepared to deal with the findings, but getting it before my follow up was a help. Because I had looked at it, I had questions prepared for the doctor when I went for my follow up. If he had gone over it first at the appt and then asked if I had questions, I doubt that I would have thought of them. It's always an option and it catches the doctor's by surprise when you appear well informed...that's always fun.

Take care and I'm hoping the same as you, no news is good news. But please, do check in once you receive more information....hope you have a good weekend.

 
Old 07-22-2007, 10:19 AM   #38
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Re: How common is it?

I have been reading these posts and I am glad everyone is getting good results!!

I have been getting those pains under my left breast, arm pit and sometimes around to the back. I have had these off and on for a couple of years. My cardiologist sent me for a ct scan and they found nodules. I went to my pulmonologist and he said not to worry, they would check back in 3 mos. A long story short, I have been going about every 3 for the past year and a half. The last one was done in May and they said that the nodules had grown slightly. They wanted me to have a PET scan done to rule out malignancy.

I had the PET and they said two areas lite up on the scan. Needless to say I was upset. My kids and husband were very upset too. They told me they needed to do a biopsy. I went for the biopsy and was on that table for an hour and a half with needles and machines hooked up and they came in and said that they didn't need to do it. They compared it with a previous scan and said that it hadn't grown. They said I must have a really bad backache because I had arthritis up and down my spine. They told me that must have made the PET scan light up.

My family and I went out of there very relieved. I called my Dr. and asked him what was going on and that I was confused. He was very short with me so I hung up and made an appt. with another pulmonologist to get a second opinion on the advice of my GP. I had an appointment with my old Dr. the following week, so I called and cancelled it. I said I would call later to make an appointment.

My old Dr. called right back and said that I needed to have a bone scan to make sure that it was not the arthritis that was making it glow. So off to have a bone scan. The next day he called and said I needed to go back in to the hospital for a biopsy. It wasn't arthritis. I went in for the biopsy and again I waited for quite a while and they kept saying it was going to be hard to get a biopsy because it was so small (2.2 cm by 6mm in thickness). I said do you mean to say I went through all this again for nothing? The nurse got snotty and said "that's a good thing". Of course it was a good thing but why was I there again. The radiologist came back in and said I had to have it done and they took 3 samples. He said I hope I got enough to be able to tell. Two days later they called and said they didn't. Now they want to do an open chest biopsy. I feel like a ping pong ball.

I know this is very, very long. After reading everyone's post I am beginning to think maybe I should wait a while and see if it grows, and then a part of me thinks if it is malignant I should get it out right away. Radiologist said that a true cancer would spread fast and mine hadn't.

What is your thoughts?

Thank you and I hope everyone is doing great!

Linda

 
Old 07-22-2007, 01:45 PM   #39
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Re: How common is it?

Hello Linda,

You know, I think the hardest part about all this stuff is not knowing. I read your post earlier and felt so bad that you were so close and they pulled you away. Now to hear that you have gone back again and with no results, how exasperating. Sooo, it sounds as if the original doc wants to do an open lung biopsy, is that correct? Is he your preference? I'm sure you read about our Dragonfly, she had a very large benign growth and they removed it, as I believe open lung. It sounds so invasive and that recovery can be for an extended period of time. Correct me if I'm wrong, but from what I read on your post it doesn't sound as if they are looking at other options other than the open lung biopsy. If so, at least there will be an answer and they will take that nuisance out.

My family members see me flinch often because I have some severe sharp pains spontaneously. Some of them have said that pain is the body's way of alerting you there is something wrong. I don't know about that, because the doctor is aware of it and as I've said before, he just tells me to breath deep. Sometimes, I believe the doctor's responses are protocal, because it seems to be consistant with what others have posted their doctors have said and done.

I apologize if I don't have any answers. But, I do hope everything you are dealing with calms down and that your findings are good news. Please keep us up on things.

 
Old 07-23-2007, 01:19 PM   #40
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Re: How common is it?

Thanks for your well wishes! I just got back from the Surgeon and they are going to take out as much nodule as they can to settle this once and for all. They cannot take any of my lung because they are in such bad shape I won't be able to function if they did.

I will be in the hospital for a 5-7 days. I will keep you posted on what they say. I also have that pain in my left side off and on and it is not pleasant! They have never been able to find out what it was. Maybe now they will know more. I guess they are going to look around a bit while they are there. They won't be moving my ribs or anything so that's a relief. If it turns out to be cancer they will be giving me chemo and radiation.

Thanks again!

Linda

 
Old 07-23-2007, 04:10 PM   #41
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Re: How common is it?

Wow Linda, it sounds as if they are moving pretty quickly at this point, finally!Have they scheduled your sugery or are you still waiting for some kind of insurance approval?

I'm sorry to hear that your lungs are in the shape they're in. Hopefully, the growth is benign and you are blessed with a speedy recovery. And thank you for sharing your thoughts about the pain...it seems as if the doctor's always act bewildered when someone mentions it. Now, for you, let's hope it's time to be rid of it and on with recovery.

Please keep us posted on the date of your procedure because you certainly will be in my thoughts and prayers.

 
Old 07-24-2007, 08:32 AM   #42
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Re: How common is it?

Seajay,
They have scheduled me for 12:30 Thursday afternoon. I will make sure I let you know the results when I get out. Hopefully, Monday.

You have a good week and weekend.

Linda

 
Old 07-24-2007, 06:20 PM   #43
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Re: How common is it?

HI all! Wow, lots has been posted since I last visited!

I wish so much that I could offer help when it comes to everyone's pain. Before my surgery, I never had any pain...so I don't really know what could be going on with all of you. I am glad to hear that gradually, you are getting some answers.

Linda,
I hope everything goes well on Thursday! I will be thinking about you. Are they doing a full thoracotomy?? I know that involves opening up the ribs (as I had this done). Or are they doing it via camera? Be sure to let us know how it goes. Remember to keep a positive attitude and I know you will have a speedy recovery!

Hope everyone is doing well otherwise. I am feeling better each day. I called my surgeon today because I still have that weird noise when taking a deep breath, and now also after I've run around the house doing chores. It scares me that it is a leak in my lung or something... I don't have any pain..it's just weird because I had no problems before my surgery! So, depending on what my surgeon says...I may follow up with my pulmonary doctor. My husband and I are planning on moving out of the area up to Sacramento in a year and a half...so I hope all lung problems are completed, as I will have to leave my remarkable doctors.

 
Old 07-26-2007, 03:46 PM   #44
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Re: How common is it?

Hi Seajay and everyone...


Back from my appointment with the specialist. Not really great news, I don't think...

Radiologist wrote "node more prominent" on his report. Specialist said that didn't say much.....just that it was still there and wasn't smaller and maybe a bit bigger. Other nodules unchanged.

She is referring me to a Thoracic surgeon to do a full lymph node biopsy.

Turns out, the bronchoscopy I had done (with negative results) only took samples inside the lungs. The node in question is outside the lung. Semi-good news is that she says I don't have a "lung cancer". She put those quotation marks in with her fingers. But now the word "lymphoma" has come up which is sickening me.

So here I am again right back at the beginning, pretty much. The specialist thinks I should hear from the surgeon in a couple of weeks.

I really, really, really could do without this...

I'm gonna try to stay away from the Internet for a bit, for my sanity's sake! I'm not feeling too badly but the over dwelling of everything is gonna kill me! Happy thoughts to you all and I will write again soon. Murphy.

 
Old 07-26-2007, 03:56 PM   #45
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Re: How common is it?

Okay Murphy, I'm replying anyway, even though you stated you will stay away from the internet. I am sorry to hear of the new concern. You have been such a help and I am praying that any diagnosis that's obtained, will be a minimal finding.

I understand why you want to avoid the internet because any search will bring up "Worst Case Scenarios," it's always the way it's worked for me. However, there are well wishers here and I'm one of them on your behalf. Please do take care.

(I'm considering calling my Pulmonogists office with the consistant gurgling and chest pains...but I have read so many posts here with people who have the same sort of complaints and are getting the same types of repsonses..."wait and see.")

It must be difficult be starting all over again with a higher degree of concern. Please know that you are in my thoughts and prayers.

 
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