Discussions By Condition: I cannot get a diagnosis.

Elevated Inflammation Markers. What's wrong?

Posted In: I cannot get a diagnosis. 19 Replies
  • Posted By: Mrs_Potato
  • April 12, 2007
  • 00:43 AM

This all started aprox. a year ago. I had a low back pain, relieved by a bowel movement. Doc ordered an abdominal scan and colonoscopy. The scan came back "normal" with the exception of "cortical tissue loss of right kidney" (which did not seem to be alerting) but it did catch a lesion on my lower lung.

From that I had a lung cat scan. 3 lesions. The scans have been repeated every 3 months w no change in size so pulmonolgist felt it may be lesions from a bronchitis when young. However, I now started having abnormal blood test results. Such as :

low hemoglobin (slight anemia)...I now take iron vitamins.
CRP level escalating. (They are now at 59.0 Norm is less than 3)
ESR level escalating. (46)
ACE test elevated at (17)

and my doctor (s) cannot seem to find what is wrong. :confused: My wbc is normal, I had tests for lupus...normal...I've had lyme disease tests, parvovirus tests, rheumatoid arthritis tests, immune disorder tests ...all normal. However, my inflammation markers (ESR / CRP) are getting higher each time. My bones ache, I'm tired...all the time, my skin hurts when depressed in areas so I was diagnosed with fibromyalgia. I'm not sure I "go with that theory" as I sometimes think they tag that when they don't know what else to diagnose?

However, the CRP and ESR is still unknown as to why. My doc said it is one of three reasons 1) an immune disorder (ruled out) 2) an infection (pretty much ruled out with normal white count 3) a malignancy

Thus, I am now worried that something is growing and malignant and they cannot find it??? I am having a pap this week. (It's the only "area" I havent researched and I am 3 years overdue :( I had a mamogram and only a fluid cyst was found and they said it was nothing to worry over. I am overweight...so I am not losing weight...even though I eat very little. (I had the stomach banding 5 years ago. No success. Lost 60 lbs and gained it back when I went back to solid foods.) :( I eat aprox 1300 calories a day total. My other labs were all normal. Cholesterol, liver functions, cardiac enzymes. All normal.

Any thoughts????? I am also going to a new pulmonologist for a second opinion on those "3" lesions at the end of the month. OH...and the strangest thing of all. The TOP of my RT foot hurts every single night when I go to bed. Not during the day. Only when I lay down. Anytime when I lay down. I had an xray of my foot AND a cat scan and both showed normal...so why on earth is it so painful? And it's on the top of my foot towards the right side of my right foot. Sometimes I think it is a vein in my foot that hurts? No swollen area's. No redness. Just pain. I would think pain would show something on the cat scan??? HELP!:eek:

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19 Replies:

  • Mrs. Potato, I hate to say this but the inflamatory changes you are experiencing, especially in light of a logical explanation via blood testing, could very well be caused by cancer. Lung cancer tends to spread, and it's quite possible that there are tumors elsewhere in your body. If your bones ache, it's possible that the tumors in your lung have in fact spread to bone (a typical location, along with the lymphatic system). The level of CRP alone would suggest a significant whole-body ailment. Consider another CT scan, specifically of the bones that are bothering you. You should also get an MRI of your chest and possibly other areas as well. CT scans are not always the best way to diagnose cancerous lesions and tumors- MRI and PET Scan can be far more efficent. You could also consider a Bone Scan. In your situation, a PET might be the best as it can be used on the whole body and would ideally highlight any tumors elsewhere. Neoplasms (tumors) can drastically alter the body's metabolism and functioning and, paradoxically, escape tell-tale blood testing signs. If you don't have an elevated WBC, then you obviously don't have any kind of viral or bacterial infection, unless you had a severely compromised immune system that was basically non-responsive to danger. How is your cholesterol level and your triglyceride level? Often cancerous tumors can affect this, lowering the HDL and increasing both HDL and triglyceride. Consult with an oncologist to see what they think, preferably a pulmonairy oncologist since they specialise in that area.Please keep us up-to-date with your story, and good luck!
    Anonymous 42,789 Replies Flag this Response
  • Hi again Mrs. Potato,One other comment- if you keep having scans of your lungs and no signs of the 3 lesions enlarging, you might want to explore the possibility of a tumor elsewhere; the lung issue could be totally beingn or, at worse, metastises of a tumor elsewhere. Most likely if you had advanced lung cancer triggering the high levels of inflamation markers, you'd also have significant breathing problems by now.Also about your weight issue- it's possible that you ARE loosing weight, but have a tumor growing inside that is counter-balancing the weightloss. If you're overweight, then it allows for the possiblity of a tumor to "hide" whereas in an underweight person, it would be more noticable. There are occasionally stories of people with 20 pound tumors inside their uterus and the person doesn't even know it because they are so overweight. I'm not saying this is what you have though, nor do I know how overweight you are. I'd definately ask for a PET Scan.
    Anonymous 42,789 Replies Flag this Response
  • Thanks. I appreciate your information. I have an appt. with a new pulmonologist at the end of the month and I will ask about a PET scan. If anything, the anxiety of all this has gone on too long and if Doc's are stumped, it makes me more anxious. I'm only 46 years old. I'm not about to wait around for something to "finally appear". Also, I do have a GYN appt. tomorrow and it is also with a new doc (female) as my previous one passed away 3 years ago and that is why I've "sat around" and not found another one. (Finally had a great one for a number of years and she passed away young) I will keep you posted. Thanks. Also, I am not familiar with bone scans...however, I will say my bones ache far more then a normal 46 year old...sometimes shooting pain in the leg bone. This is all odd for me as I am normally a very high pain tolerant person. Thus, that makes me more concerned as I am not a complainer. As for my weight...anything is possible. I am 243 and 5'4 so I am considered obese. However, I am proportunate and even when I had the stomach banding people would say "no way could you be 100 lbs. overweight"...however, according to the charts...I am and always have been around this weight since gaining 107 lbs with my first pregnancy with toxemia. The best I've lost was to 199 and I looked and felt great! I will keep you posted. Many thanks.
    Anonymous 42,789 Replies Flag this Response
  • Even with all the negative results from your tests, this sounds like a rheumatologic disease. Have you talked to/ seen a rheumatologist?They may not have a name for what is wrong, but a good rheumatologist would probably be able to help. Good luck.
    Anonymous 42,789 Replies Flag this Response
  • PET Scans are probably the most expensive diagnostic test available (more expensive than MRI) so don't be surprised if the doctor won't order one. Push them however as it shows inflammation in the body. In light of your situation it makes sense. Something has to be able to explain why your inflammatory levels are increasing without a clear abnormality. Don't conclude cancer yet but don't let the doctors talk you out of it either without doing sufficient testing to prove it's not. Multiple myeloma is one type of cancer that would elevate ESR, but it also tends to cause kidney problems, fatigue, and high protein serum results. If all that is normal in your situation (except for the ESR) then it's probably not Myeloma. Bone scans (usually MRI or CT) are used to look for abnormalities and changes. If your bone density were decreasing because of something like osteoporosis, this would reveal it. Speaking of osteoporosis, could you be going through menopause? You are around the age when it begins so maybe some of your symptoms are related? Did you have hormone levels checked? Have you been evaluated by a cardiologist? The high ACE level might be caused by a heart-related issue. Often ACE-inhibitors are used in treatment of heart problems. This might also explain why your other levels are increasing.
    Anonymous 42,789 Replies Flag this Response
  • Thanks for your post. I don't believe menopause is happening as yet....I have no "female" irregularities or concerns. The ACE is somewhat concerning, but it is such a new test I tend to wonder about the reliability? I do take a beta blocker, for hypertension, and if after all is said and done I will most probably go to a cardiologist. (Albeit about 5 years ago I had an echo which was normal and considering my chest ct did not show any abnormalities...I haven't been in any major "rush" to add another doc to my regime, lol" It is very frustrating. I am the most stunned that they cannot find anything abnormal in my ct and xray on my right foot as the top of it hurts with pains up the bone to almost my knee. VERY sensitive to touch it. Also note, it is ONLY when I lay down. Not during the day. Truly odd.
    Mrs_Potato 23 Replies Flag this Response
  • Pain while laying down could be caused by a spinal problem- pinched nerve, tumor, etc. Did the chest CT include your spinal cord? How would you describe the pain when laying down- is it just as you lie down, or is it present for the entire duration of your being flat? If the latter is occuring then it might be a case of your weight pressing on something in the spinal region. If the CT didn't include your spine, consider asking your doctor if another (this time of the spine) might be useful. They may want to test via MRI instead. If nothing is found on the spine, perhaps you should consult with an orthepeadic oncologist- bone cancer can cause pain though usually there is a growing mass to substantiate it. As far as the scan's use with diagnosing heart problems, I'm not too sure. Typically an echocardiogram is performed. You mention a Beta Blocking agent however- has your doctor thoroughly looked into this to determine if you are having some kind of allergic reaction or side-effect? I suppose for now the best thing is to consult a Rhumatologist. There must be some clear explanation for this problem.
    Anonymous 42,789 Replies Flag this Response
  • Yes, I do go to a rheumatologist. The pain is not in my back or spine..its on the top of my foot when laying down. Oddest thing. The rheumatologist is the one that ruled out Lupus and auto immune and who did all the lab ordering and who knows my inflammation markers keep escalating. It's frustrating. As for the beta blocker, I've been on it for nearly ten years. No problems there. Thanks for your reply. I'll keep you posted. Take care.
    Mrs_Potato 23 Replies Flag this Response
  • Oh I didn't mean it was in your spine, just that the spinal cord is the nerve center of the entire body so usually if there is anything neurological going on it's either brain or spine related. In theory you could have a pinched nerve there that would cause problems in your foot. The fact that it happens when you lay down makes me think is might be spine related because you're putting pressure on your back. Perhaps your lower spine? If you had a spinal CT or MRI then you might ask a radiologist to re-examine the area. It would be somewhat unlikely to have a form of bone cancer that ONLY causes pain when lying down- typically it would be a constant thing. Can you describe the pain better? Is it a throbbing sensation? A burning sensation? Gnawing? Is it one particular area or the entire top part of your foot? A bone spur or cyst might be causing it but that would definitely show up on CT. Are you wearing constricting shoes? 10 years on the beta blocker probably wouldn't be a problem then. Let us know what the results of the Pap test are and what the pulmonologist says.
    Anonymous 42,789 Replies Flag this Response
  • Oh I didn't mean it was in your spine, just that the spinal cord is the nerve center of the entire body so usually if there is anything neurological going on it's either brain or spine related. In theory you could have a pinched nerve there that would cause problems in your foot. The fact that it happens when you lay down makes me think is might be spine related because you're putting pressure on your back. Perhaps your lower spine? If you had a spinal CT or MRI then you might ask a radiologist to re-examine the area. It would be somewhat unlikely to have a form of bone cancer that ONLY causes pain when lying down- typically it would be a constant thing. Can you describe the pain better? Is it a throbbing sensation? A burning sensation? Gnawing? Is it one particular area or the entire top part of your foot? A bone spur or cyst might be causing it but that would definitely show up on CT. Are you wearing constricting shoes? 10 years on the beta blocker probably wouldn't be a problem then. Let us know what the results of the Pap test are and what the pulmonologist says.The pain in my foot, when laying down, is like a terrible ache...sort of like if you had a bruise and you depressed it? That is the best description and chronic. If my husband touches it....I cringe and ball up in pain...HOWEVER, once the initial pain of him finding the "spot" and puts pressure on it it no longer hurts. It's like without pressure it hurts. Sounds weird, eh? As for shoes, I have always been a "stickler" for sponge low heeled shoes with support. Fact is...I have the best leather tie up shoes that all my friends laugh and we call them my "nun shoes" as that is what they remind us of...but because they are so supportive and comfortable...I've always gone with that styel. (In my 20's and 30's I was a medium heeled person..but never foot problems. It wasn't until standing on my feet so much that I converted to nun shoes in my late 30's. lol) Yes...I will keep you posted. Many thanks and have a good day.
    Mrs_Potato 23 Replies Flag this Response
  • please look into Chronic Fatigue Syndrome or symptoms of Myalgic Encephalomyelitis It's an organic neurological disorder that affects many body systems with symptoms such as you are describing I've been ill for years and am now being tested...I have over 70 symptoms Good Luck...mommy cat
    mommy cat 1,654 Replies Flag this Response
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  • Pap all normal. New pulmonologist says that the lesions are non concerning. Typical for midwestern folks due to upbringing around steel mills, and the soils in the midwest. non concerning. Inflammation markers still elevated. Foot pain still exists and I still do not believe the "pains" are from fibromyalgia. however, not much to do but "sit and wait" until something is real apparent to explain the elevated inflammation markers.
    Mrs_Potato 23 Replies Flag this Response
  • Your ACE test showing high may be a sign of Sarcoidosis. Sarcoidosis may not show up in your lungs but in other organs of the body. In addition you are showing an elevated SED rate which would also be a sign. Talk to your doc, your symptoms seem to flag Sarcoid.
    Anonymous 42,789 Replies Flag this Response
  • I have a similar medical profile to yours. After 60 yrs I was finally diagnosed first with a Primary Immune Deficiency (apparently I was born with it & it helps explain why I was sick alot growing up). I don't have the #s handy, but it took drilling down with the blood tests to find it, because at the first levels they show right on the border of low, but still in the normal range. When we got to the bottom of it, it turns out only 1 of the #s is truly low & 2 others in the low/normal range, but they really pull the overall down, even though it shows low/normal. Then, I was also diagnosed with CIDP, Chronic Inflammatory Demyelinating Polyneuropathy, in my case an auto-immune neurolgic disease which primarily affects the peripheral nerves. Mine started out with a bruising kind of pain you describe on the top of my feet. It was intermitent. The elevated inflammation levels seem to have a lot to do with the fact that my immune system is not normal. I have numerous auto-immune conditions. I just recently went through a spell of pain in what seemed like every cell of my body. It was debilitating. Fortunately I'm improving. My rheumatologist/immunologist does talk about Fibromyalgia, but I see it as a lesser issue in terms of cause, probably somehow related to all the rest. However, I still don't know exactly why I had this flare up. Best wishes in your quest. Be persistent in collaborating as the expert in your body!
    Anonymous 42,789 Replies
    • September 26, 2009
    • 03:08 PM
    • 0
    Flag this Response
  • Thank you for the info on Chronic Inflammatory Demyelinating Polyneuropathy I am going to see a new Dr and will certainly mention this. Hugs and good luck too.
    Anonymous 42,789 Replies
    • September 26, 2009
    • 10:24 PM
    • 0
    Flag this Response
  • Hi There,I briefly went through the blog. I might have missed some detail and might be suggesting you steps which you might already got done yet. If occult malignancy or occult infection is still a differential then should discuss with your doctors about tagged WBC scan for infection), and PET scan (if not doable then total body CT scan and bone scan). Your foot pain (hyperaesthesia) may have the differential of vasculitis, or neuropathy (relatively less likely). If I were you, I would certainly have a discussion with an oncologist, and if no diagnosis made, then serially follow up CRP and ESR. If they keep on increasing, then may consider emperic steroid trial with a close monitoring for adverse reactions.
    Anonymous 42,789 Replies
    • September 30, 2009
    • 07:58 AM
    • 0
    Flag this Response
  • I am 27 years old and I started out with the same problems you have. Lower back pain relieved by bowel movement. It was thought that I had gall bladder problems. However no doctor would believe that gall bladder was the cause. I didn't fit the model. I tried for a year to find out what the lower back pain was about, no luck. Then 6 months later, the back pain had gone away but my feet started bothering me. It has now been over a year of actively trying to find out what is causing the pain. Im soo tired of telling doctors the whole story over and over. I have elavated SED rate, but i have since i was like 14. WBC high. All markers of inflammation levels show to be high. I was wondering if you ever found out anything with your feet problems. Please let me know
    Anonymous 42,789 Replies
    • October 3, 2009
    • 00:58 AM
    • 0
    Flag this Response
  • Did you find out what was wrong? I was just called by my doc saying a am anemic and have very high levels of inflammation. I also have had a problem for almost 2 years now of a pain in the top of my right foot close to the right side that is unexplained. I haven't gone in to see the doc yet since his call but was just wondering if you had any suggestions since you already went through it.This all started aprox. a year ago. I had a low back pain, relieved by a bowel movement. Doc ordered an abdominal scan and colonoscopy. The scan came back "normal" with the exception of "cortical tissue loss of right kidney" (which did not seem to be alerting) but it did catch a lesion on my lower lung. From that I had a lung cat scan. 3 lesions. The scans have been repeated every 3 months w no change in size so pulmonolgist felt it may be lesions from a bronchitis when young. However, I now started having abnormal blood test results. Such as : low hemoglobin (slight anemia)...I now take iron vitamins.CRP level escalating. (They are now at 59.0 Norm is less than 3)ESR level escalating. (46)ACE test elevated at (17) and my doctor (s) cannot seem to find what is wrong. :confused: My wbc is normal, I had tests for lupus...normal...I've had lyme disease tests, parvovirus tests, rheumatoid arthritis tests, immune disorder tests ...all normal. However, my inflammation markers (ESR / CRP) are getting higher each time. My bones ache, I'm tired...all the time, my skin hurts when depressed in areas so I was diagnosed with fibromyalgia. I'm not sure I "go with that theory" as I sometimes think they tag that when they don't know what else to diagnose? However, the CRP and ESR is still unknown as to why. My doc said it is one of three reasons 1) an immune disorder (ruled out) 2) an infection (pretty much ruled out with normal white count 3) a malignancy Thus, I am now worried that something is growing and malignant and they cannot find it??? I am having a pap this week. (It's the only "area" I havent researched and I am 3 years overdue :( I had a mamogram and only a fluid cyst was found and they said it was nothing to worry over. I am overweight...so I am not losing weight...even though I eat very little. (I had the stomach banding 5 years ago. No success. Lost 60 lbs and gained it back when I went back to solid foods.) :( I eat aprox 1300 calories a day total. My other labs were all normal. Cholesterol, liver functions, cardiac enzymes. All normal. Any thoughts????? I am also going to a new pulmonologist for a second opinion on those "3" lesions at the end of the month. OH...and the strangest thing of all. The TOP of my RT foot hurts every single night when I go to bed. Not during the day. Only when I lay down. Anytime when I lay down. I had an xray of my foot AND a cat scan and both showed normal...so why on earth is it so painful? And it's on the top of my foot towards the right side of my right foot. Sometimes I think it is a vein in my foot that hurts? No swollen area's. No redness. Just pain. I would think pain would show something on the cat scan??? HELP!:eek:
    Anonymous 42,789 Replies Flag this Response
  • Bumping this one back to life, no one responded to the last question,,,what did you find out ?
    junkman12345 1 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.
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