Hi. My name is Staci and I am 16 years old. about 2 years ago i had a CT scan for on going symptoms of severe back and stomach pain but instead of finding the reason for my pain the doctors told me that i had lung nodules throughout both of my lungs. these nodles range from 2-4 cm and there are 14. the doctors werent very concerned at that time I wasn't feeling as short of breath. a month later i was diagnosed with crohn's disease. A few months went by and i was finally sent to a lung specialist due to my increased shortness of breath and being extremely tired and there I found out I only had only a 68% lung function. They gave me breathing treatments but the treatments did not help. I was tested for hystoplasmosis, due to the nodules, lupus and several other diseases and infections and all the tests came back negative. after some breathing workouts they ruled out the possibility of asthma, nad they dont think its allergies, I was even tested for a vocal cord disfunction. They also said the nodules were not scarred tissue. The lung doctor then claimed my problems were from the Crohn's disease but my stomach doctor has never heard of such a thing. The thing is it's been two years since then and I havent even had a biopsy and I'm just getting worse, I'm on my second lung doctor and she said in the beginning that the nodules were high enough to do a biopsy and that she would see about doing one, but then she claimed that they arent high enough. Now she says that there is nothing wrong with my lungs and it is just a weakness from my crohn's but my crohn's is in remission so why isnt my lungs getting better???? I was even sent to a lung therapist but had to quit within 2 weeks because it mad me too tired and didnt help my breathing. I'm always tired and cant keep up with sports any more, and my iron just dropped from a 41 to a 21 within a month and thats with 2 iron pills a day and now im on three and its not helping. Im really sorry to ramble on and on I know there are people far worse and this probably seems like nothing but the doctors have told my mom that they don't know what the nodules are, what caused them or when they are going away and I am just really frustrated and tired because I feel like they could do more. I mean is it normal for someone my age to have lung nodules and breathing difficulties? please tell me what you think
I'm really sorry to bother you again but I have also had this really annoying deep loud cough for the past 5 years and nothing has really been done for this. could this have contributed to my problems? Also when the doctor listened to my chest he couldnt hear anything and I i have a 98% oxygen level. I would really appreciate your thoughts on this matter
I saw your plea on the anemia list. sorry you are having a time of it and not really finding any answers. I don't really have a clue what might be wrong, but just wanted you to know, someone is reading your questions.
Were you tested for TB? What has put your Crohn's into remission?
I raise small ruminents. There has been a controversy as whether a disease similar to Crohns in small ruminents( and some large ruminents like cows) can cause the disease in humans. It is known as Johnes....mycobacterium paratuburculosis. some of the same drugs used to treat tb work on putting the affected animals into remission. Research is being done at the U of Wisconsin on Johnes and seeing if there is a connection to Crohn's.
I have read lately, that Crohns is being considered an autoimmune disorder? Have you done a search for lung nodules and/or autoimmune disorders on the internet?
thank you soo much for your help i have been tested for tb and everything imaginable the only thing i havent had done is a biopsy which i think needs to happen because the doctors dont know what they are dealing with yes the nodules havent grown and thats probably why they arent concerned but i could end up with permanent lung damage. i have looked up lung nodules and there isnt a whole lot about them. all it says is that most are benign especially if u have multiples but if there is only one then it could be cancerous. If the doctors would just do a biopsy they would be saving so much time instead of putting me on these meds and sending me to unnecessary therapy. by a biopsy the could find the source and treat me. Im considered in remission because the last time i had a colonoscopy which was a year ago my uclers were gone and my pain has been mild. However,i still have stomach troubles and frequently go to the bathroom. im going to look up some autoimmune disorders right now
Staci, I read your posts and really am sorry you are having so much trouble and little help. I think I might say don't give up trying to find a dr. Perhaps a primary care that is good in knowing specialists and is caring also one who will keep trying to get you diagnosed and on a treatment. Of course that can be hard. Perhaps a thought I read in another response post might help. That is call dr. office and ask what treatments they do. See if you can't get a feeling of what the dr and office staff are. Also ask friends about primary they see and if the primary though may not be able to diagnose he will keep trying and digging until he gets the right dr. for you. I know that some drs. will go on net and look for info. I certainly hope this helps you. In any case know that people care. Also look on net yourself and see if your friends can help with this too.
I just joined this message board and saw your post. If you live in the Southwest U.S. or have ever visited there, or if you have received gifts from someone there, you should ask your doctor about coccidioidomycosis (Valley Fever). This is the fungus spore prevalent in the Southwest, especially Arizona, Southern California, and New Mexico. I have been more than astounded at how widespread it is and the potential for serious medical complications, including lung nodules. There is a ton of information about it on the web, including at distinguished institutions like the Mayo Clinic.
I hope this helps you and my prayers will be with you.
Have you had a PET scan? My husband had multiple lung nodules, shortness of breath and the cough. They did a PET scan and it suggested sarcoidosis but they did a biopsy called a mediansteinoscopy and then gave a definite diagnosis of sarcoidosis. He is doing very well with the sarcoidosis right now. It is treated with prednisone. I am praying you get some answers - don't give up. I'll be praying for you. Bern
Last edited by cookingmom; 04-09-2006 at 03:28 PM.
In an earlier posting, I said I had an annual physical and subsequent CAT scan that showed a 1.9 x 2.0 CM nodule in my right lower lung. A much smaller 4 MM spot showed on my upper left lung. My doctor suspected it may be malignant because of my smoking history and sent me to a pulmonologist for a lung capacity test. She elected to do a coccidioidomycosis test based on my travel history to Arizona and the results were Comp Fixation 1:4, IgM Negative, IgG Positive. (Positive for the infection) Coccidioidomycosis is also known as Valley Fever, endemic to the Southwest, particularly, Arizona.
The pulmonologist also ordered a PET scan and I received the results today. There was not any unusual uptake of F 18 FDG in the nodule (or anywhere else) I am celebrating tonight!!! And I am thanking God for hearing the prayers of my friends, my family and myself these past two and a half weeks.
Just further validation that not every lung nodule is malignant. Now that said, the radiologist did caution that “bronchioloaveolar cell carcinoma has a very low metabolic activity, but the lack of radiotracer uptake is somewhat reassuring in that this very well could represent a post infectious granuloma”. (Like VF)
I certainly have more to do to get through this whole thing, but now I can focus on the VF. My symptoms have continued to improve and I am feeling better each day without medication at this point. I will see the Infectious Disease doc next week to see what the next steps are.
Tonight though, I am reflecting on our risen savior and God’s love. He does indeed listen to those who reach out to Him.
Hope you keep us updated.
(Just a note on the PET Scan – My research shows that the PET can be positive with VF nodules under certain conditions. So please don’t anyone assume that a hot PET automatically means malignancy)