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Old 11-03-2010, 03:36 PM   #1
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remote granulomatous disease?

I have 5mm- 12 mm nodules in both lower lobes of my lungs. Had several CT scans and finally a PET scan. It showed no hypermetabolic activity to suggest cancer, so great. But, it did say that findings suggest these are related to remote granulomatous disease, and suggest a repeat CT in 3 months. So, I looked it up but there is very little info on it. Waiting to talk to the doctor, but thought I'd ask you all if you knew what that would mean. Valley fever? TB? sarcoidosis? Interstitial lung disease? I have Lupus and Fibromyalgia.
Thanks,

 
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Old 11-05-2010, 08:05 AM   #2
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Re: remote granulomatous disease?

Okay, I guess no one wants to try a guess at this one. My doctor still has not called back, and it's very frustrating. This may be nothing and I'm worrying for nothing, but in the off chance it is something, it would be nice if I knew whether I should be hounding my doctors to give me an answer.

I don't want to sound like a hypochondriac, but when you look this up you come up with a whole bunch of different things that don't sound very good. If I looked it up and it said it was nothing, then I could relax. Some options are sarcoidosis, tuberculosis, and interstitial lung disease, all of which would require some big time drugs. And, since the nodules are getting bigger and more, it seems as if something done sooner is best (as in most diseases). This may not be cancer (Thank the Lord!) but it may be not so great either.

If you have any suggestions other than waiting, I would be open to hearing from you. Even discussing the red tape associated with the doctor's office would be better than no answer at all.

I really don't have any symptoms other than some morning sinus congestion as if I might be coming down with a cold, but goes away through the day. So, really not much of anything. But, some of these diseases have mild symptoms in the beginning and by the time the symptoms show up, then it's too far progressed. Let me know what you think, even if it's to tell me to quit worrying.
Best Regards,

 
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Old 11-11-2010, 05:14 PM   #3
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Re: remote granulomatous disease?

Ok, get this...I don't know what you have...or what granulomatous is....but I might have it too. I try not to get into much discussion with the Dr's about it...as soon as they tell me its not cancerous I'm out the door. About 4 years ago...I was in the ER for bronchitis and the Dr. told me I had a spot on my lung...and to follow up with my primary care Dr., since then I have been having yearly scans on my annual visit.
I changed Dr's recently (not by choice) and I told my new Dr. that I had this nodule that my old Dr. watched. Well, he saw 3 nodules..sent me for an MRI and then called me immediately..because I was freaking out..he had me wait at the MRI office. he said they were not cancerous...but then they saw something on my liver...Had an MRI done on my liver...got a voicemail telling me it was nothing of concern (benign)...so I don't worry and I haven't asked what he thinks it is....I'm thinking it may be these things you are talking about..so I'm watching your post and replies.

 
Old 11-17-2010, 07:44 AM   #4
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Re: remote granulomatous disease?

Quote:
Originally Posted by Misssy2 View Post
Ok, get this...I don't know what you have...or what granulomatous is....but I might have it too. I try not to get into much discussion with the Dr's about it...as soon as they tell me its not cancerous I'm out the door. About 4 years ago...I was in the ER for bronchitis and the Dr. told me I had a spot on my lung...and to follow up with my primary care Dr., since then I have been having yearly scans on my annual visit.
I changed Dr's recently (not by choice) and I told my new Dr. that I had this nodule that my old Dr. watched. Well, he saw 3 nodules..sent me for an MRI and then called me immediately..because I was freaking out..he had me wait at the MRI office. he said they were not cancerous...but then they saw something on my liver...Had an MRI done on my liver...got a voicemail telling me it was nothing of concern (benign)...so I don't worry and I haven't asked what he thinks it is....I'm thinking it may be these things you are talking about..so I'm watching your post and replies.
Thanks, Missy. I saw my doctor on Monday. He said that I had some very valid concerns because of the growth of the nodules and my recent bouts of illness. He is testing me for Valley Fever and Sarcoidosis and I will get results in a week. I am to repeat the CT scan in 6 months.

I read up on each of these illnesses, and they can present with no symptoms, although I have been very tired lately. I have been active in gardening in the dirt, so dredging up some VF spores, is a definite possibility where I live. Also, sarcoidosis is related to the autoimmune diseases and I have my share of those, too. I guess I forgot to mention that I have Lupus and Fibromyalgia and have been very sick in the last year.

I spoke with a friend who is a doctor, although a pediatrician, and she was concerned after hearing my story. She said that the nodules were non- calcified that indicates something recent or active. If they were calcified, it would be something old, and most likely nothing of concern. I would have rather had those.

I just want to make sure that these possibilities are addressed, and not swept under the rug. I'm glad my doctor is being responsible and checking these things out. I'll let you know what the results show.
Thanks for your input. I hope your nodules turn out to be nothing.

Last edited by Sunsetnan; 11-17-2010 at 07:50 AM. Reason: clarification

 
Old 11-28-2010, 11:43 PM   #5
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Re: remote granulomatous disease?

My test for Valley Fever was positive for AB IgG (EIA) and IGM (ID), but negative for IgG (ID). The comp fixation was *** (which I would think means 3+) and the interpretation was *. My doctor said something about it being borderline and wants the test repeated again in 3 weeks. Probably testing for a false positive or to check the course of the disease. The ACE test (for sarcoidosis) was on the high normal side. So, I guess this is still a wait and see thing. Thought I'd give you an update.
Best Regards,

Last edited by Sunsetnan; 11-29-2010 at 12:15 AM. Reason: Added info

 
Old 12-05-2010, 09:19 AM   #6
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Re: remote granulomatous disease?

Quote:
Originally Posted by Sunsetnan View Post
My test for Valley Fever was positive for AB IgG (EIA) and IGM (ID), but negative for IgG (ID). The comp fixation was *** (which I would think means 3+) and the interpretation was *. My doctor said something about it being borderline and wants the test repeated again in 3 weeks. Probably testing for a false positive or to check the course of the disease. The ACE test (for sarcoidosis) was on the high normal side. So, I guess this is still a wait and see thing. Thought I'd give you an update.
Best Regards,
Hi,

Sorry for the late response as I just found your posts. I have CVID and suddenly became ill in June. We had been watching multiple nodes on my lungs for a year at this point doing ct's every 3 months. In June though, the CT blew up with nodes "too numerous to count". Pulmo freaked, biopsy asap, no cancer, showed granulomas. They treated me for Valley Fever even tho tests were negative (I may not be able to test positive to antibody tests because of my immune disease) and no spores were found in biopsy. Went back to work in August and now am out again. They THINK I have GLILD - Granulomatous Lymphocytic Interstitial Lung Disease. I am waiting to go to National Jewish Hospital in Colorado for diagnosis and treatment plan.

What else I find interesting is I have all the symptoms of lupus (cannot test positive to antibody tests) and they have dx me with fibro as well (which i think is lupus lol). My only symptoms at the time I got sick in june was low grade fever and extreme fatigue, like I couldn't even load the dishwasher. I too can not find anything about this disease, its so rare.

 
Old 12-06-2010, 01:37 AM   #7
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Re: remote granulomatous disease?

I noticed that you are from my old stomping grounds. I grew up and lived in that area for many years. In fact, I still go to see my doctor there. I contacted my doctor to clarify, and he is repeating to check for a false positive. The results will be sent to the health department. My niece who is an NP said that in her practice, any positive result is sent to the HD.

I'm sorry to hear of your problems. I was curious as to the biopsy. I think that if the CT shows more and bigger, then that will be the next step. Can you describe the procedure and your tolerance?

I was once thought to have ILD when I was pregnant with my youngest, who is now a teenager. But, because I was pregnant, they couldn't do any radiological tests until later in the pregnancy. By then, I had pretty much improved.

I know that a lot of lung problems have very little if no symptoms. What made them think to order imaging studies for your lungs? Mine was caught my accident. My endocrinologist said that he didn't like to do CT scans because then you find these little things and then you are obligated to have to do more radiological studies just to rule out problems. But, what if... you do find something that turns out to be significant and the cause of your problems, right?

What medication are you taking for the Valley Fever suspicion? Diflucan? I was told that it can cause nausea and stomach upset. Are you having any of those symptoms?

Still waiting to get tested and scanned. No new symptoms.
Best Regards,

Last edited by Sunsetnan; 12-06-2010 at 01:40 AM. Reason: Added

 
Old 12-06-2010, 07:07 AM   #8
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Re: remote granulomatous disease?

Quote:
Originally Posted by Sunsetnan View Post
I noticed that you are from my old stomping grounds. I grew up and lived in that area for many years. In fact, I still go to see my doctor there. I contacted my doctor to clarify, and he is repeating to check for a false positive. The results will be sent to the health department. My niece who is an NP said that in her practice, any positive result is sent to the HD.

I'm sorry to hear of your problems. I was curious as to the biopsy. I think that if the CT shows more and bigger, then that will be the next step. Can you describe the procedure and your tolerance?

I was once thought to have ILD when I was pregnant with my youngest, who is now a teenager. But, because I was pregnant, they couldn't do any radiological tests until later in the pregnancy. By then, I had pretty much improved.

I know that a lot of lung problems have very little if no symptoms. What made them think to order imaging studies for your lungs? Mine was caught my accident. My endocrinologist said that he didn't like to do CT scans because then you find these little things and then you are obligated to have to do more radiological studies just to rule out problems. But, what if... you do find something that turns out to be significant and the cause of your problems, right?

What medication are you taking for the Valley Fever suspicion? Diflucan? I was told that it can cause nausea and stomach upset. Are you having any of those symptoms?

Still waiting to get tested and scanned. No new symptoms.
Best Regards,
Hi - I wonder if we saw the same doc? I WAS seeing an infectious disease specialist who treated my immune disease so naturally he treated what they thought was Valley Fever.

Let me back up. When I was dx with Common Variable Immunodeficiency - they automatically do a chest ct to check for damage - usually bronchectasis (spelling is wrong). I didn't have it but several nodes were found. We watched them via ct scan every 3 months. Then they exploded, scan said some grew and new ones grew, numbers were "too numerous to count". A biopsy within a week. Fine needle biopsy while I was awake. Laid on my stomach, they stuck a needle in my back in several places - no pain. Coughed up some blood right after, very easy procedure. For immunodeficient people, things like this are scary, kind of risky but I did good. NO VF spores were found. Lymphocytes were found, granulomas. They kept treating me for VF - up to 800mgs of Diflucan. Then the specialist started saying he didn't think it was VF and it was the granulomas in my lungs. Pulmo wouldn't listen. Finally I went back to work and took myself off the meds. I was down to 400mgs when my hairloss started. I mean CLUMPS in the shower everyday. Got off the meds about 3 months ago, hair still falling out, random swelling in feet, Reynauds, rash on my arm, livedo retiuclaris, all kinds of weird symtpoms. Anyways all docs agreed it was NOT from the Diflucan, been off it too long. Saw a new immuno in LA for a lung consult. He said he thinks I have GLILD - that was in Sept. It's a form, like a sister of ILD. Very rare. Can't find anything about it on the internet. One article only. I have an appointment in Colorado in Jan at National Jewish.

I personally had no problems on the Diflucan. First 400mgs then ended with 800mg. Still no side effects at that level. The only symptoms I had was low fever and extreme fatigue.

Did they discuss BOOP with you? Also causes granulomas. Are you typically sick? Well? And you said they are not calcified right? That would indicate past infection.

 
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