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  • Mystery!!

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    Old 11-25-2014, 09:30 AM   #1
    zipster
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    Mystery!!

    I have been ill for 14 years and during this time i have had every test possible except Lymes. I was told i had chronic fatigue syndrome but i was never convinced. I had vertigo a few years ago and had another brain scan which showed 3-4 lesions so they suspected ms. The neurologist gave me a Lumbar puncture and evoke potenetial tests which were normal so he wants to see me in 12 months. Also my liver function test was abnormal so i got tested for hepatitis and had a liver scan which were both ok. The gastroenterologist did further bloods and EBV igG was reactive which means i had EBV sometime in the past. Also positive nuclear antibody result with homogenous hep2 pattern. The rest of the antibody screen was negative. He wants to do a guilded liver biopsy to test for lupoid hepatitis. Nothing ever adds up with my results, obviously something autoimmune is going on but i never get any definite answers for a diagnosis.
    Anyone else have anything similar?

     
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    Old 11-27-2014, 05:37 AM   #2
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    Re: Mystery!!

    Does obody have any input?

     
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    Old 11-27-2014, 07:17 AM   #3
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    Re: Mystery!!

    Hi & welcome. There have been several others right on this board, and recently at that, who've had liver biopsies for suspected AIH (autoimmune hepatitis); to find those posts, you could just eyeball the titles of recent posts on this board, looking for anything to do with "liver". I think (but I'm going on memory here, which is scary ) that their doctors needed to determine whether their high liver values were due to AIH, or to some form of viral hepatitis, or to some other liver problem---because treatment differ. Also, I think their doctors wanted to rule out other auto-immunes (lupus for one) because AIH can occur "standalone" or in conjunction with some other autoimmune.

    That's a real limitation of ANA, btw, that it can elevate in so many conditions; also due to viral or bacterial infections; also due simply to aging or to a family tendency. Since your liver values are elevated, it does make sense (to me, anyway) that they start there.

    If above isn't enough to get you started & really rolling, give a holler. (Those posts are so full of info that it would be silly of me to try to excerpt them...) I hope you post again really soon. Sending warm wishes, Vee

     
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    Old 11-27-2014, 07:27 AM   #4
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    Re: Mystery!!

    Thanks Veej, i will have a look.
    Got myself in a right tizz thinking i have some serious liver disease going on.

     
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    Old 11-27-2014, 08:05 AM   #5
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    Re: Mystery!!

    Good, we'll watch for your next post & can probably help you to figure out where you're currently at in a "liver diagnostic process" that might be autoimmune. So touch base soon, OK?

     
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    Old 11-27-2014, 08:15 AM   #6
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    Re: Mystery!!

    I have had a few positive test results but i never get any further to knowing what's wrong. I have above normal rheumatoid factor but rheumatologist said it wasn't exceptionally high and doesn't mean i will have rheumatoid arthritis. My anti ccp was positive but immunologist said it was only weakly positive. There's obviously something autoimmune going on but haven't found out what even though it's been 14 yrs

     
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    Old 11-28-2014, 05:49 AM   #7
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    Re: Mystery!!

    Good morning. Yesterday I was in & out, then had a PC problem, so I didn't get to the things I'd probably ask if I were you. For the record, I have lupus without any liver problems, so please consider the source!

    Liver values. Which values on your *metabolic panel* have been elevated or depressed in the past, do you know? (For example, AST, ALT, Lipase, Alkaline Phosphatase, etc.) And are we talking a little off, or a lot off?

    Other blood labs for autoimmunes. You said "the rest of the antibody screen was negative", but I can't tell from that which autoimmune tests were included. For example, tests for systemic autoimmunes, like lupus, RA*, etc.? How about tests for specific auto-antibodies that can target the liver, like anti-SMA (smooth muscle AB) and AMA (anti-mitochondrial AB)?

    *You did mention anti-CCP, an early test for RA, but you said it was so low-positive that your doctor dismissed RA. However, I actually think that both the blood tests that are positive in "many" RA patients, meaning anti-CCP and RF, can stay SERONEGATIVE FOREVER! Therefore, I actually don't think a negative or low-positive on either test necessarily proves anything. You could ask your doctor to speak more to this.

    Groups of liver problems. Your doctor may have said that he's "looking for AIH", but my guess is that the jury is still out pending biopsy, especially given that your liver scan was normal. Per an article I read, there are various groups of liver issues (this list is likely partial):
    • AUTOIMMUNES: Autoimmune Hepatitis (AIH), Primary Biliary Cirrhosis, and Primary Sclerocholangitis.
    • GENETIC. Hemachromatosis, Hyperoxaluria and Oxalosis, and Wilson's disease.
    • HEPATITIS. A, B, and C (which you said were ruled out by blood labs).
    • CANCER.
    • OTHER. Alcohol-related cirrhosis; and nonalcoholic fatty liver disease (NASH).

    Other thoughts, based on the little I know as a patient:
    • Was your gallbladder ever imaged to look for inflammation, gallstones, or sludge? I *think* gallbladder problems can cause abnormal liver values. Several people I know who've ended up having flat-out gallbladder attacks first experienced years of lower-level pain before getting the vicious attack that finally pointed their doctors to gallbladder.
    • Do you take any meds, including OTC's? I ask because some meds (including OTC's) can affect liver values. Additionally, there's a "subset" of lupus called Drug-Induced Lupus Erythematosus (DILE) in which meds that don't affect "normal people" can adversely affect "susceptible people". In this form of lupus, ANA elevates; and anti-single stranded DNA (anti-ssDNA) and anti-histone are almost always positive. This form can cause pain, fatigue, skin rashes, etc.; but unlike classic lupus (SLE), this subset typically doesn't affect major organs and typically requires no treatment other than identifying the culprit drug(s), then discontinuing it (or them).

    Ha, I just reread this. What a mess! I hope others add & refine!

    But my big point is that although you can't know more until your liver biopsy, I think there are reasons to be hopeful that things will work out better than you fear. If your problems really are all related & have been going on for 14 years, the fact that you haven't fallen apart yet is good, right? So hang in there, OK? Looking forward to hearing more & sending my best, Vee

     
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    Old 11-28-2014, 06:07 AM   #8
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    Re: Mystery!!

    Ok veej heres all i have had tested;
    ana pattern
    anti gastric parietal cell
    anti nuclear antibody
    anti mitochondrial antibody
    anti smooth muscle antibody
    ds dna antibody
    anti ccp was slightly high 21
    serum electrophoresis
    IgM
    IgG
    ena jo-1 antibody
    ena scl-70 antibody
    ena anti-la antibody
    ena ro
    ena sm ab
    ena rnp sm
    centromere ab
    I haven't a clue what most of these are but they were negative.

     
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    Old 11-28-2014, 06:18 AM   #9
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    Re: Mystery!!

    Sorry it was my ALT that was high at 94 but then it started going back down.
    I have been tested for lupus and my rheumatoid factor was slightly high but rheumatologist said nothing to bother about.

    Last edited by zipster; 11-28-2014 at 07:18 AM.

     
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    Old 11-28-2014, 09:15 AM   #10
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    Re: Mystery!!

    Zipster, as I said, I believe ALT elevates for multiple reasons, including RA. Honestly, the fact that you've been slightly positive for both RF and anti-CCP STILL catches my eye, because both are associated with RA. I just don't know if some OTHER rheum might react differently to "low positives". Hopefully someone else here who's had low-positives can comment.

    You said you've been ill for 14 years and that your doctor at one point diagnosed CFS, so I assume fatigue is one of your symptoms. Have you had other symptoms?

    My sense is that your doctor needs the liver biopsy because, without it, he doesn't have enough to make any particular dx, and, conversely, doesn't have enough to rule out certain things either. Another person who wrote on his experience ended up having a biopsy for pretty much the same reasons, I think... So while I wish you weren't facing a biopsy---I wish there were some easier way---I hope your doctor gets the necessary clarity from it. A close friend of mine has refused the biopsy despite her liver values being substantially elevated for years. She takes a statin, which can cause liver damage, so I really worry that she's refusing the one test that could provide clarity. Please let us know what happens next, OK? Sending my best.

    Last edited by VeeJ; 11-28-2014 at 09:21 AM. Reason: typo

     
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    Old 11-28-2014, 10:02 AM   #11
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    Re: Mystery!!

    Yes i do suffer with fatigue but not all the time. I also have off balance feelings, headaches, brain fog, shooting pains etc. I have good and bad periods but i have never felt normal in the 14 years. I also had EBV when i was 18 (45 now) and started with a joint thing thats never been diagnosed either. I started in my early 20's where random joints would be really painful to move for 2-3 days and then go again. I could have it in my shoulder joint or hip joint but i could go for months or a year without it coming back again.I had it last week actually in my right shoulder and its really painful to lift my arm up etc. I got tested for arthritis all those years back but it was negative. I am a medical mystery i think lol!!

     
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    Old 11-28-2014, 08:11 PM   #12
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    Re: Mystery!!

    X-rays are often done for RA when blood labs and other findings aren't conclusive, as would be the case in *seronegative RA*. The joint damage RA causes is erosive, and on x-ray, can give the appearance of "mouse bites". So in light of your low-positive anti-CCP and RF, doing x-rays might make sense.

    In contrast, the joint damage in the other rheumatologic conditions---like lupus, etc.---is almost always non-erosive.

     
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    Old 11-29-2014, 02:48 AM   #13
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    Re: Mystery!!

    It's not that easy here in the uk, the last time i saw the rheumatologist she did a chest xray which was fine and then i was discharged.
    I will see what the bloods she took on tuesday reveal and see where i go from there.
    Nobody can seem to figure me out, over the years i have saw an ent specialist, neurologist, immunologist, rheumatologist, gynaecologist. I have had a colonoscopy, sigmoidoscopy, chest xray, 3 mri brain scans, lumbar puncture and evoke potential test. Probably more but i can't remember.

     
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    Old 11-29-2014, 03:27 AM   #14
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    Re: Mystery!!

    Hi, again. Has your doctor characterized your ALT elevation? From what I've read, 97 is likely only a mild elevation. (In contrast, in severe liver disease, ALT and AST can elevate 100 to 1,000 times.) Anyhow, that's why one would hope to have an "easier" test, one that fits a condition that features somewhat elevated liver values as opposed to crazy high---and also includes your other symptoms.

    Re colonoscopy and sigmoidoscopy, did you have GI problems? I had episodic GI misery for 15+ years, had all the GI tests multiple times, yet nothing was found. When I started getting targetlike skin rashes, it took another 7-8 years for my local doctors to suspect a form of lupus; and sure enough, my rash was one of the lesser-known lupus rashes. Laughably, my GI problems stopped quickly once I started Plaquenil and sun avoidance.

    Speaking of GI problems, were you tested for Celiac? I think there's a blood test for it. For the record, here in the U.S., I think a patient's ability to suggest tests is no better than anywhere else! Sure, I'd ask or gently convey that I thought we were on the wrong track, then get my head handed to me on a platter. I think it's par for the course for probable autoimmunes. If you're on the milder side, you can languish for years. It's horrible, I feel for you.

     
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    Old 11-29-2014, 03:46 AM   #15
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    Re: Mystery!!

    Quote:
    Originally Posted by VeeJ View Post
    Hi, again. Has your doctor characterized your ALT elevation? From what I've read, 97 is likely only a mild elevation. (In contrast, in severe liver disease, ALT and AST can elevate 100 to 1,000 times.) Anyhow, that's why one would hope to have an "easier" test, one that fits a condition that features somewhat elevated liver values as opposed to crazy high---and also includes your other symptoms.

    Re colonoscopy and sigmoidoscopy, did you have GI problems? I had episodic GI misery for 15+ years, had all the GI tests multiple times, yet nothing was found. When I started getting targetlike skin rashes, it took another 7-8 years for my local doctors to suspect a form of lupus; and sure enough, my rash was one of the lesser-known lupus rashes. Laughably, my GI problems stopped quickly once I started Plaquenil and sun avoidance.

    Speaking of GI problems, were you tested for Celiac? I think there's a blood test for it. For the record, here in the U.S., I think a patient's ability to suggest tests is no better than anywhere else! Sure, I'd ask or gently convey that I thought we were on the wrong track, then get my head handed to me on a platter. I think it's par for the course for probable autoimmunes. If you're on the milder side, you can languish for years. It's horrible, I feel for you.
    Hi, thanks for your replies it means alot.
    Yes i was having bowel changes and nausea but when i had the sigmoidoscopy all they saw was mild gastritis and i was told ibs.
    Yes the ALT was 97 but 2 weeks after it had went down to 70 and then a few months later my lft was ok. I do take quite alot of paracetamol and pain killers as well as fluoxetine and ampitryptyline so don't know if that's why my alt was raised. I also have a drink once a week so i am going to cut down on the tablets and not have a drink at all to see if this helps.

     
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