sorry another Question: They say if u have... - PBC Foundation

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sorry another Question

melbourne profile image
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They say if u have AMA is found in 95% of people which pbc, does That mean that 5 % can have the antibody and not have pbc??? so many Questions and a long wait to see a liver doctor. thanks k. x

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melbourne
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Puddles profile image
Puddles

Hi Melbourne, no that means that out of all the people that do have PBC, 5% of them are not positive for AMA.

Hello melbourne.

If one tends to have the AMAs at a positive titre as my results stated ('high titre of anti-mitochondira antibodies which is highly suggestive of PBC') then normally diagnose of PBC.

Some patients with PBC can have a negative result for AMAs too but still have PBC if they are symptomatic at the time. I have found out that AMAs can actually fluctuate and it is possible for someone having a past reading of AMA to then have no showing of them.

Even if one has these antibodies and they are diagnosed with PBC without any symptons and normal liver function test and other blood readings, it means they may never progress beyond how they are at the time or in time they may progress to have symptons of PBC.

Before I saw a 'liver doc' in 2010 my NHS appt took 13wks. Should have been 11 (wow!) but the hospital sent me a letter of cancellation with a new appt for the following wk (12 wks wait) but I was due on holiday having booked when I received original appt so had to explain and got an appt for the wk when I came back from my holiday making it the 13 mark then. Then of course I had another approx 8 wks (I have never really bothered to count!) before I got the result I had PBC due to the slow wheels of the NHS!

Meanwhile if you are worried and are waiting to see a doctor (excuse me if you have previously posted, I've not gone back and read any), try to do as I did in 2010 whilst waiting, attempt to look after oneself even better and with a view to thinking you may have PBC try to aid your system. I did (as I suspected but never said I thought as time went by during 2010 I could have PBC). Strangely enough when I finally got all the print-outs for the bloods during 2010 from the GP when he gave me the diagnose that Dec 2010, I did take note that in the time between my hospital appt wait and going on the first visit to the hospital my LFTs had actually started to come down without any form of medication. Perhaps it is possible to help ourselves at times.

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