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Old 11-26-2012, 07:17 PM   #1
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pbc? scleroderma?

Hi there,
This is my first post here. I first went to my GP in October this year, thinking I had some sort of food intolerance. My main symptoms were bloating and extreme fatigue. She ordered some blood tests and they came back with a B12 deficiency (168) and elevated amylase (218). I was immediately given B12 injections (a total of 6 injections in 2 weeks). She then requested anti smooth muscle and anti parietal cells antibodies. The results came back negative for anti smooth muscle and a note from the lab saying that due to the presence of antimitochondrial antibodies of the M2 type at a titer of 1:80, they had not been able to look for the parietal cell antibodies.
We repeated the AMA antibodies and they came back positive one more time.
Then my doctor requested an ANA and ENA panel. The ANA antibodies came back positive, nucleolar type, titer of 1:1280 and another note from the lab mentioning that they had found AMA antibodies. I've read that the nucleolar type is quite specific for scleroderma, but I do not have any symptoms. No swollen joints, no pain in the joints. My main symtptoms are some muscle pain and extreme fatigue. (E.g. I can't walk uphill, this would kill me. After walking a couple of blocks I feel as if I'd ran a 20-mile marathon and my heart feels like it's about to burst.) Although I do wake up 2 or three times at night because of a dry mouth or nose.
Could this be PBC with nucleolar ANA? My GP sent me to a gastroenterologist and my appointment is in a couple of days. Should I be seeing a rheumy instead?
Thanks in advance for your replies.

 
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Old 11-27-2012, 01:00 AM   #2
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Re: pbc? scleroderma?

Hi & welcome. I think nucleoar pattern is associated with scleroderma and with CREST syndrome, a limited form. ANA patterns are assigned by lab techs; they're judgment calls that can't "drive" a diagnosis.

When ANA is positive and symptoms are present, a wide array of tests for specific autoantibodies is usually done. Did your GP request only anti-smooth muscle and anti-parietal? (I'd want them all, the whole she-bang.)

What's "PBC"? (Don't recognize that, sorry.)

I'd see a rheumatologist to be screened for that wide array, because I believe others can affect GI tissue. (I had GI problems but was dx'ed with lupus.) Also, autoimmunes run in packs, many patients have multiples. (Sjogren's was another candidate for me. It features dry eyes and mouth, but of course GI problems can also cause those.)

Another reason: autoimmune tests should be run only by labs who specialize in them because they're so tricky to perform.

Finally, from reading I think many who test for antibodies that fall in the general area of scleroderma eventually end up diagnosed with a far milder condition called Mixed Connective Tissue Disorder (MCTD).

I hope this helps some & that others add more. Please keep at it & let us know how you're doing. Good luck! Best wishes, Vee

Last edited by VeeJ; 11-27-2012 at 01:14 AM. Reason: add something

 
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Old 11-27-2012, 09:24 AM   #3
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Re: pbc? scleroderma?

Like VeeJ said, the pattern in ANA tests is subject to interpretation. PCB is actually associated more with the anticentromere pattern. As she said also, UCTD, undifferentiated Connective Tissue Disease is far milder than any of the other systemic sclero's. I also found the following: Positive results are found (infrequently) in patients with CREST (calcinosis, Raynaud’s phenomenon, esophageal hypomotility, sclerodactyly, and telangiectasia) syndrome, relatives of patients with primary biliary cirrhosis and other autoimmune diseases, in reference to M2. Of course, I'd want to see a gastroenterologist right away, as you are doing, to rule it in or out. I thought PCB was even more rare than systemic sclero, but in actuality, although rare, not nearly so much so that if you are indeed developing it, chances are good that your gastro has experience with it, to rule in or out, and if in, be competent to treat. PCB is a chronic disease but medications are now available to treat the symptoms so that normal lifespan and quality of life is now the normal standard for people with PCB. I do hope that whatever you have is something minor, but if not getting early diagnosis and treatment under a specialist's care is so very important to getting back on the road towards controlling and treating autoimmune diseases. I wish you the best and good luck. Please keep us updated and let us know how you are doing!

 
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Old 11-27-2012, 03:39 PM   #4
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Re: pbc? scleroderma?

Thanks Veej and luca689! Tomorrow I have my appointment with the gastroenterologist. Hopefully he will be able to order more specific tests and/or refer me to a rheumy.
At this point I don't know if all my symptoms were just due to the B12 deficiency and the antibodies came up as an early warning. I do not have the connective tissue symptoms or the liver symptoms for the primary biliary cirrhosis, so whatever I have, if I have something, must be in the early stages. It's just that I've read of so many people waiting for years to be diagnosed, that if I was lucky enough to find out about auto antibodies at this stage, I should try to make the most out of it.
Thanks once again! I'm so happy to have found you guys.

 
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