Discussions By Condition: I cannot get a diagnosis.

Please Help! No one will listen...

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: Erichsgurl2
  • May 18, 2009
  • 01:51 AM

I am almost 27 years old, with a history of smoking for about half my life. (About a pack a day). My parents also smoked (in the home, car, etc...) while I was growing up. In August of 2007 I began having problems with shortness of breath during rest. I first experienced it while I was laying down for a nap. I realized as I was trying to go to sleep that I couldn't breathe. If I am at rest, I have a difficult time trying to catch my breath even though my oxygen saturation is usually good. I usually have abdominal pain as well, on both sides just below (or under) my ribs. It started out with just having these "episodes" sometimes where I would feel like I couldn't get enough air. That August, I had an episode that bothered me so much I went to the ER. They thought I must have a pulmonary embolism, so I had a CT scan. The doc came in and said that there was a 4mm lung nodule in my right lung, but no blood clot. They decided I should follow up in a year, but not before scaring the be-****s out of me. In the past year and a half, I have had the shortness of breath get worse. I have it constantly with worse "episodes" where I feel like I absolutely cannot breathe. In January of this year, I was admitted to the hospital again for a pulmonary embolism, and again instead, they found another lung nodule in the same lung. So then there were two. I was instructed to follow up in 3 months this time (by the civilian doctor treating me, my husband is in the military, so I deal with military hospitals a majority of the time. So, three weeks ago, I went in for my 3 month follow up CT scan. The results were given to me by a nurse on the phone. She said that there was a lung nodule and to follow up in a year (mind you, I don't think the doctors are looking at my previous radiology reports because we have moved twice). I had my records faxed over before this last CT scan, but I don't think they bothered to look at them. When I probed her more about what was found, she was hesitant to answer any of my questions. I asked her if there was only one, because I had had two in January. She said that all she could tell me was that there were two larger nodules (although still small) and multiple tiny lung nodules. (which would be new compared to the radiology report from January) I immediately made a new appointment to talk to my doctor, but it's not until June. Any time I mention any of this to a doctor they completely discount everything I say. I am fatigued all the time, have some mild joint pain, a chronic cough, persistant yawning, and of course the shortness of breath is a great bother. I am nervous they will blow me off again and tell me to wait another year as the nurse said on the phone. It's already been a year and a half, with change to the CT scan results, shouldn't they be doing something more? What is it they should be doing, biopsies, or maybe a PET scan? I know that at my age it is not common for cancer to be an issue, but I do know it is a possibility. I am desperately looking for a reason for all of this and for a doctor that will take my fears seriously. I feel terrible all the time and my lifestyle has been severely affected from all of this. I have a hard time even doing housework. I don't even know what to do anymore. If you know of something that could help, or have any advice, it is more than welcome.

Oh, my husband worked in a hangar filled with asbestos for about a year and continuing up to and after my symptoms began...I don't know if that matters. He didn't work with the asbestos itself, it was just old and there.

Thank you :D

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  • I'm sorry that you are going through this. I believe it is essential that you communicate well with your docs and work with them. If they are doing something you don't understand or not being forthcoming with their diagnosis.....you need to find a way to communicate or find new docs. It really is that important that you not only understand your problems, but understand the treatment process too. It is also important that you keep your own medical 'file'--your records from every doc you see and what they find, and how they find it-- to take to new docs. They need a complete history in order to properly treat you. Pulmonary nodules are usually caused by a past trauma or infection. They can also be the beginning of lung cancer. This needs to be determined. Typically, the growth rate of the nodule can be a diagnostic tool. This is probably why they keep making you come back months later-- they are checking the growth of the nodules and of course any other new developments. If your nodules are staying the same size, good. If they are growing, more extensive testing needs to be done. This could be a biopsy, which will be a localized procedure. I am fatigued all the time, have some mild joint pain, a chronic cough, persistant yawning, and of course the shortness of breath is a great bother.If you are not recieving enough oxygen on a regular basis, this could cause the fatigue, the yawning and even the joint pain. The cough may be due to the nodules. The shortness of breath can be caused by many things, including stress. Have a list of your symptoms in hand and ask your doc to explain his/her thoughts on the cause of the specific symptom. You need to know what they think, even if they think it's no big deal. I am nervous they will blow me off again and tell me to wait another year as the nurse said on the phone. It's already been a year and a half, with change to the CT scan results, shouldn't they be doing something more? What is it they should be doing, biopsies, or maybe a PET scan? I know that at my age it is not common for cancer to be an issue, but I do know it is a possibility. I am desperately looking for a reason for all of this and for a doctor that will take my fears seriously. I feel terrible all the time and my lifestyle has been severely affected from all of this.Walk into the office (dressed professionally or 'nice') with a plan for the appointment in mind. Have an agenda-- you need answers. Make a list of your current medications, past history. Make another list of your current symptoms and what you have been told about them. Next, most importantly, make a list of questions you need your physician to answer. This is your body, your health. It's just like going to a lawyer or accountant-- they provide a service for a fee. They have expertise-- but that only helps you when you understand their logic, their plan for your health. It has to be a two-way street.Best of luck to you. With the embolisms happening too....this does not need to wait. The sooner you can get to the bottom of this, the better. Especially with your history of smoking (I'm an ex-smoker too!). Although many nodules are benign....not all. I wish you luck and good health!
    Harmonium 322 Replies Flag this Response
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