Discussions By Condition: I cannot get a diagnosis.

Doctors cannot figure me out?

Posted In: I cannot get a diagnosis. 39 Replies
  • Posted By: Anonymous
  • October 1, 2007
  • 04:37 PM

I had some joint pains and low fevers starting back in June 07. I would have 3 or 4 good days and then the rest of the week was bad?
I started going to the doctor in August to figure it out but so far no dice. Things have progressed since August to where I now have fevers around 103 daily (im taking 2 Tylenol and 4 Motrin 2 or 3 times a day) and along with these fevers I have basically a total body muscle ache.
The last blood test results had my white blood cells over 24000 and my ESR (showing inflammation) at 97 (suppose to be 0-10).
So right now daily I have these symptoms:

fevers
flu like chills (probably fever related)
muscle aches/weakness (inflammation)

I have been to my family doctor, ER doctors, and an infectious disease specialist and so far they keep coming up with nothing. Other than the raised levels in the blood. (white blood cells and ESR)

Nothing is being found so nothing is being done and I feel terrible everyday. Anyone with any ideas would be great.

im 33
good overall health prior to this

Steve in Michigan

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39 Replies:

  • Dear Steve.. I had ALL of your symptoms and many more. I was diagnosed with CFS and Fibromyalgia...told I would never work again.I am now back to work after suffering for years and getting better within two months. Here is the link for NAET practicioners in Michigan. http://www.naet.com/subscribers/doctorResults.asp?FromQS=1&db=default&uid=default&City=&State=MI&Zip=&Last=&Country=&Status=on&sb=4&view_records=Search and here is the link for Bioset in Michigan http://www.bioset.net/index.php?option=com_mtree&task=listcats&cat_id=71&Itemid=39 Take charge of your own health. Find one of these people and go. It is the only thing that will help. Best wishes Steve,,,,mommy cat:)
    mommy cat 1654 Replies
    • October 1, 2007
    • 10:24 PM
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  • mommy cat, did you truly have a wbc in the 27000 range and an ESR in the 90s, and were diagnosed with CFS and fibromyalgia? If so, I'd say you're a victim of malpractice. Steve, try a rheumatologist - they can be great mystery solvers.
    Anonymous 42789 Replies
    • October 2, 2007
    • 02:09 AM
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  • Ive been to a family doc, an ER doc (3 docs actually), and now have been to an infectious disease specialist?Im getting worse and have a little girl Id love to be around for.HELP.The inflammation and fevers are horrible. My grandpa is 80 and gets around better than me. I used to be very strong, active and into sports now I can barely get off the couch. Every night is a struggle, I cannot sleep and have bad night sweats, fevers, chills, aches etc.IM VERY SCARED.
    Anonymous 42789 Replies
    • October 2, 2007
    • 02:18 AM
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  • Hi Steve,Did the drs test for Lyme and co-infections, using a Western Blot test? Check out www.lymenet.org for more info. Hope ya feel better, ~~Jersey Lymie
    Anonymous 42789 Replies
    • October 2, 2007
    • 09:45 AM
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  • Rheumatoid factor – positive in rheumatoid arthritis Elevated WBC’s and ESR – polymyositis LE cells (polymorphonuclear leukocytes) found in bone marrow – lupus. Rheumatoid arthritisLupusPolymyositis As Fauve says, go to a rheumatologist.
    rad-skw 1605 Replies
    • October 2, 2007
    • 10:28 AM
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  • Why isnt this letting me post again?I have developed a pain when swallowing that feels more like its in the back of my head than throat? Hard to eat and drink.
    Anonymous 42789 Replies
    • October 2, 2007
    • 03:23 PM
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  • Fauve....I never mentioned anything about my lab values...I simply stated that I had those "symptoms"..I did not say I had the same test results. I was not a victim of malpractice, however, I was incorrectly misdiagnosed several times. How is your daughter doing? I think of you and her often. I hope you are all well....mommy cat
    mommy cat 1654 Replies
    • October 2, 2007
    • 07:44 PM
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  • Fauve....I never mentioned anything about my lab values...I simply stated that I had those "symptoms"..I did not say I had the same test results. I was not a victim of malpractice, however, I was incorrectly misdiagnosed several times. How is your daughter doing? I think of you and her often. I hope you are all well....mommy cat Okay. I'm sure the clarification can't hurt, cause that was how I read it. Steve has some serious lab values there that I believe do discount CFS - someone correct me if I'm wrong. My first thought, like rad's, was lupus. Thanks for asking about my daughter. She's doing great, is symptom-free, and has been concentrating on her photography.
    Anonymous 42789 Replies
    • October 2, 2007
    • 08:36 PM
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  • Well back to the ER last night, chest pain when breathing. Chest CT checked out normal so guess is inflammation.ESR up to 114.WBC down from 24,300 to 18,900?neutrophil 84 should be no higher than 66lymphocyte 12 should be no lower than 23D-dimer 1071 shouldnt be higher than 500Hemoglobin 12.5 shouldnt be lower than 14Hematocrit 36.7 shouldnt be lower than 42platelet count 56 shouldnt be higher than 450CPK 26 shouldnt be lower than 55Albumin 3.2 shouldnt be lower than 3.5Alk Phosphate 316 shouldnt be higher than 126SGOT (ast) 64 shouldnt be higher than 40SGPT (alt) 99 shouldnt be higher than 56HELP ME
    Anonymous 42789 Replies
    • October 3, 2007
    • 01:52 PM
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  • Have you had any of these tests? This is from the lupus foundation. "You have already had many, many lab tests before a lupus diagnosis is delivered. The truth is you will have to undergo more, perhaps many more, in order to properly manage the disease and how it affects you. We provide descriptions of these tests, what they are designed to monitor, and clear information to help you understand the results of these tests. The first laboratory test ever devised for lupus was the LE (lupus erythematosus) cell test. When the test is repeated many times, it is eventually positive in about 90 percent of the people with systemic lupus. Unfortunately, the LE cell test is not specific for systemic lupus (despite the official-sounding name). The test can also be positive in up to 20 percent of the people with rheumatoid arthritis, in some patients with other rheumatic conditions like Sjogren's syndrome or scleroderma, in patients with liver disease, and in persons taking certain drugs (such as procainamide, hydralazine, and others). The immunofluorescent antinuclear antibody (ANA, or FANA) test is more specific for lupus than the LE cell prep test. The ANA test is positive in most people with systemic lupus, and is the best diagnostic test for systemic lupus currently available. If the test is negative, the patient will likely not have systemic lupus. On the other hand, a positive ANA, by itself, is not diagnostic of lupus since the test may also be positive in:Individuals with other connective tissue diseases;Individuals without symptoms; Patients being treated with certain drugs, including procainamide, hydralazine, isoniazid, and chlorpromazine;Individuals with conditions other than lupus, such as scleroderma, rheumatoid arthritis, infectious mononucleosis and other chronic infectious diseases such as lepromatous leprosy, subacute bacterial endocarditis, malaria, etc., and liver disease. ANA test reports include a titer. The titer indicates how many times an individual's blood must be diluted to get a sample free of anti-nuclear antibodies. Thus, a titer of 1:640 shows a greater concentration of anti-nuclear antibodies than a titer of 1:320 or 1:160. The titer is always highest in people with lupus. Patients with active lupus generally have ANA tests that are very high in titer. Laboratory tests which measure complement levels in the blood are also of some value. Complement is a blood protein that, with antibodies, destroys bacteria. It is an "amplifier" of immune function. If the total blood complement level is low, or the C3 or C4 complement values are low, and the person also has a positive ANA, some weight is added to the diagnosis of lupus. Low C3 and C4 complement levels in individuals with positive ANA test results may also be indicative of lupus kidney disease. Physicians will sometimes perform skin biopsies of both the individual's rashes and his or her normal skin. These biopsies can help diagnose systemic lupus in about 75 percent of patients.When someone has many symptoms and signs of lupus and has positive tests for lupus, physicians have little problem making a correct diagnosis and initiating treatment. However, a more common problem occurs when an individual has vague, seemingly unrelated symptoms of achy joints, fever, fatigue, or pain. Some doctors may think the person is neurotic. Others may try different drugs in the hope of suppressing the symptoms. Fortunately, with growing awareness of lupus, an increasing number of physicians will consider the possibility of lupus early in the diagnosis.A patient can help the doctor by being open and honest. A healthy dialogue between patient and doctor results in better medical care, not only for people with lupus, but also for anyone seeking medical treatment. To whom should a person go for a diagnosis of lupus? Most individuals usually seek the help of their family doctor first, and this is often sufficient. However, when unresolved questions arise or complications develop, another opinion from a specialist may be advisable. The choice of specialist depends on the problem. For example, you would see a nephrologist for a kidney problem or a dermatologist for a skin problem. Most often, a rheumatologist or clinical immunologist specializing in lupus is recommended. Referrals can be made through your family doctor, the local medical society, or the local affiliate of the Lupus Alliance of America."Source: National Institute of Health
    rad-skw 1605 Replies
    • October 4, 2007
    • 10:43 AM
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  • Alk Phosphate 316 shouldnt be higher than 126alk phosphate is usualy related with bone issues and liver problems I THINK. mine is like 5000 but I have a sever genetic bone disorder.sounds to me like you may have an auto immune disorder. id see a rheumatologist. Im not sure if other things are caused by high levels of alk phosphate but if not then something is causing you liver issues... hm.. cant lyme disease do that?again seriously. SEE a rheumatologist. they deal with auto immune disorders and many other imflammatory conditions like lupus which is an auto immune disorder to I believe. so yeah your best bet see a rheumatologist ASAP!and its not letting you post cause your not registered non registered posts are monitored and approved.
    PixieMischief 16 Replies
    • October 4, 2007
    • 01:48 PM
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  • Well the infectious disease doctor has me going in for a head, abdominal and pelvic CT tomorrow and next week I get a test that starts with an I and is a nuclear medicine test where they give me radiation and take pictures and stuff to see where the white blood cells are going to fight in my body?Got the fingers crossed that, that test will find something out for me?Developing pains in chest region when breathing now and ER shows heart and lungs are fine? Maybe some of the inflammation Im filling with everyday.Was in the front of my chest yesterday and the day before now its in my back mostly. But I cannot take a big breath or even barely blow my nose.thanks for trying guys. If the infectious disease people cant get it Im heading to a rheumatologist next.
    Anonymous 42789 Replies
    • October 4, 2007
    • 06:50 PM
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  • Well back to the ER last night, chest pain when breathing. Chest CT checked out normal so guess is inflammation.ESR up to 114.Detects activity of inflammation. It's an indirect measure of the degree of inflammation present in the body. It actually measures the rate of fall (sedimentation) of erythrocytes (red blood cells) in a tall, thin tube of blood.Nonspecific test to help diagnose conditions associated with acute and chronic inflammation, including infections, cancers, and autoimmune diseases. Nonspecific because it doesn't tell doctors where in your body or what is causing it. Also it can be affected by other conditions besides inflammation. It is helpful in diagnosing two specific inflammatory diseases, Temporal Arteritis and Polymylagia Rheumatica.WBC down from 24,300 to 18,900?Conditions or medications that weaken the immune system, such as HIV infection or chemotherapy, cause a decrease in WBC.WBC count is used to suggest the presence of an infection or leukemia. It's also used to help monitor the body's response to various treatments and to monitor bone marrow function.A count which continue to rise or fall to abnormal levels indicate that the condition is getting worse. Counts which return to normal indicate improvement.Elevated WBC means a bacterial infection, inflammation, leukemia, trauma, or stress.neutrophil 84 should be no higher than 66lymphocyte 12 should be no lower than 23Types of WBC (white blood cells)D-dimer 1071 shouldnt be higher than 500If you were female I'd say you're taking birth control pills. But since you're not ...A D-dimer is used to help rule out, diagnose, and monitor diseases and conditions that cause hypercoagulability, a tendency to clot inappropriately.Elevated D-dimer is seen with liver disease, pregnancy, eclampsia, heart disease, and some cancers.Hemoglobin 12.5 shouldnt be lower than 14Hematocrit 36.7 shouldnt be lower than 42platelet count 56 shouldnt be higher than 450Hemoglobin is decreased with anemia.Hematocrit is decreased with anemia.Platelet count is decreased with bleeding disorders and systemic lupus erythematosus, pernicious anemia, hypersplenism, leukemia, and chemoptherapy.CPK 26 shouldnt be lower than 55Creatinine phosphokinase or CPK is ordered in patients who may have had a heart attack.Albumin 3.2 shouldnt be lower than 3.5Also known as ALB it's used if a person seems to have symptoms of a liver disorder or nephrotic syndrome. Also used for checking nutritional status when you've lost a lot of weight.Low results suggest liver disease. Other liver enzyme tests are ordered to determine exactly which type of liver disease.Low results can reflect diseases in which the kidneys cannot prevent albumin from leaking from the blood into the urine and being lost.Low levels can be seen in inflammation, shock, and malnutrition.Low levels may also suggest conditions in which your body does not properly absorb and digest protein, such as Crohn's disease or sprue or in which large volumes of protein are lost from the intestines.Alk Phosphate 316 shouldnt be higher than 126Also known as ALP is used to test for liver disease. It is generally part of a routine lab testing profile, often with a group of other tests called a liver panel. It is usually ordered along with several other tests if a patient seems to have symptoms of a liver or bone disorder.A high ALP usually means that the bone or liver has been damaged. If other liver tests such as bilirubin, AST, ALT are high the ALP is coming from the liver.SGOT (ast) 64 shouldnt be higher than 40Also known as AST. Ordered when there is exposure to hepatitis viruses, those who drink too much alcohol, persons with a history of liver disease in their family, or those taking drugs what can cause liver damage.With cirrhosis and certain cancers of the liver, AST may be close to normal but it increases more often than ALT.SGPT (alt) 99 shouldnt be higher than 56Also known as ALTIn both these tests, AST and ALT, results 10 times the highest normal level indicate acute hepatitis. That would be 400 for AST and 560 for ALT.With cirrhosis and certain cancers of the liver, ALT may be close to normal.There you have the definitive information on your test results.
    Anonymous 42789 Replies
    • October 4, 2007
    • 09:08 PM
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  • yep if you read my post youd see I pretty much posted the same thing about liver. Im very surprised if all the other liver tests are normal. Im not sure how you can have such high levels of phosphates without bone of liver issues. mines in the thousands but I have sever genetic bone disorder. I seriously would get more tests about your liver if I was you
    PixieMischief 16 Replies
    • October 5, 2007
    • 00:34 AM
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  • Probably an I-131 uptake test. The I is for iodine. (or I-123)
    rad-skw 1605 Replies
    • October 5, 2007
    • 10:52 AM
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  • Any chance all this could be caused by the surgical metal in my right ankle that was put in in 2005?There is redness and swelling there now but that just appeared yesterday. Could the screws through the bone have caused a bone infection?I normally cannot have a piercing because the metal in my skin will not heal?Im just hoping for something more simple.my daughter is getting scared and asking my wife if daddy is going to die. I sure hope someone gets me un-sick SOON.
    Anonymous 42789 Replies
    • October 6, 2007
    • 04:37 PM
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  • Your lab values are very worrisome to me. I personally think you need to be admitted to a "tertiary care" hospital- usually these are university hospitals. It would be worth driving some distance if you need to in order to get a thorough work-up. I have a very hard time understanding why you were sent out of the ED with your symptoms and labs. This could be treatable-- you need a good, academic doctor (a rheumatologist would be a good start). Please don't mess around much longer- please try to find a way to get to a university hospital. Very best of luck...
    Anonymous 42789 Replies
    • October 12, 2007
    • 05:11 AM
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  • I just read your post about your ankle- YES that is very possible (that this has caused an infection). YOU NEED TO BE ADMITTED TO A GOOD HOSPITAL-- from what I've read of your posts, unfortunately, this does not include the hospital where they sent you home from the ED with a sed rate (ESR) as high as yours, along with your other symptoms. PLEASE GO TO AN ACADEMIC/TERTIARY HOSPITAL. Please! Your daughter deserves it! I am so sorry you are going through this...
    Anonymous 42789 Replies
    • October 12, 2007
    • 05:15 AM
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  • InfectionComplications of surgical intervention include local infection in the form of cellulitis or osteomyelitis and systemic infection in the form of sepsis. Early recognition of a local infection may prevent the development of sepsis and, thus, decrease patient morbidity. The most common pathogen is Staphylococcus aureus. Other pathogens include group A streptococci, coagulase-negative staphylococci, and enterococci. Appropriate antibiotics should be administered if an infection is suspected. Serial C-reactive protein and erythrocyte sedimentation rate measurements should be obtained and may be used to assess treatment response to antibiotics. If infection cannot be eradicated with antibiotics, I&D of the surgical wound may be necessary, with removal of orthopedic hardware, but only if the hardware is not performing its role. So, yes it could very well be the source of your problem. Have you been back to the ortho doc?
    rad-skw 1605 Replies
    • October 12, 2007
    • 11:19 AM
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  • Well once the Infectious disease doc couldnt find an infection when they did an Indium (nuclear medicine) test and my CTs all came back normal and fine they sent me upstairs to a Rheumatologist and within 20 minutes she says to me every symptom and lab result is pointing at adult Still's disease?So as of this morning I started on steroids. I guess there are other treatments available too but this first one is to see how/if it works. I really hope this is it and treatments start fixing me back up.Anyone with any experience with Still's?
    Anonymous 42789 Replies
    • October 13, 2007
    • 06:07 PM
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