Newbie and confused (bet that's the first time you've read that lol)

[Von007]

Hi Everyone,

Last November at my Fibromyalgia appointment I asked to have some bloods done as I had been feeling very unwell (sudden weight loss, 17 lbs in a matter of weeks, severe nausea, dizzy spells, urine infection, extreme tiredness etc.) Results showed up 3 auto antibodies Ro52, Ro60 and L.A. I had to chase up my results through my doctor who wasn't familiar with antibodies so I consulted Dr Google (as you do) and found they were related to Lupus or Sjogren's Syndrome both of which I appeared to tick most of the boxes.

After a battle of wills with my doc I got him to refer me to a gastroenterologist who retested my antibodies and the one attached to my liver (wasn't aware they could take up residence lol) came back abnormal. In the meantime she referred me on to a liver specialist and a urologist. On my next visit with her I told her that a doctor had told me approx 8 years ago that I had pbc and that my reading was very high! However, upon my own doctor's return from holiday he laughed it off (the other doc had a drink problem si i put it dow to that). I was enraged, all that stress and giving up my red wine was for nothing or so it seemed. The gastro was shocked at this and her whole demeanour seemed to change where she could hardly look me in the eyes and practically rushed me out the door (this was in sharp contrast to my first visit with her).

Unhappy and feeling even more confused and in particular unsatisfied I marched back into her and said "woman to woman do you think this is pic and she looked at me gravely, pursed her lips and nodded her head slowly in the affirmative. She then said that she was speaking about 'My case' to a top liver specialist while she away to a conference. She went on to say that you usually only get one set of tests carried out but that she managed to get mine tested twice (presumably from this head huncho she met). She said both readings for pbc were very high.

To cut a rather long story short (apologies!) I received a letter from her saying I was symptomatic pbc but yhat my lft's have been relatively satisfactory lately (they have been raised in the pass numerous times) and that she has red flagged me (being seen now in 2 weeks as opposed to the original 79 weeks! I have dry mouth dry eyes, itching shins, extreme tiredness blah blah blah....

Does anyone know where or what these high readings come from eg is it those aforementioned auto antibodies?

Apologies for the long winded essay just thought some of you may not have received your Sunday papers yet lol

[Hidden]

Did you get your AMA results? Titre above 80 is relevant. That's a big indicator of PBC.

[Von007 in reply to Hidden]

Hi scoutfinchlondon and thank you for your reply.

You see this is where I am confused as no one has mentioned AMAs as such just the fact that my readings for BBC were very high. Although the gastro did chase up the early reading which she said in her letter it was a positive reading reading in 2009. I will ask at the hepatologhy app in the 24th of this month then I have an appointment with the gastro the following day.

Back in 2009 I had a large gland removed from my throat, a few days later I suffered from ventricular tachycardia heart rate was 360 so blue light job to the hospital 5 say say on heart machine followed by laser ablation in the heart 6 months later. Also 3 years ago I was admitted to hospital with severe upper tummy pains which they thought may have been stones in my tall bladder but they couldn't find any on the ultra sound scan so I discharged myself, no pains since but he sure is keen to get his hands on my gallbladder but I have refused thus far as I didn't see the point of having an operation if not completely necessary.

Not sure if any of this is related just giving background in case it is.

Thank you again!

[Von007 in reply to Von007]

Obviously meant PBC and not tall bladder!

[Hidden in reply to Von007]

Hiya, I'm nit medically trained but it was my AMA (anti mitrocondrial antibodies that were positive @ 360 titre. You need to ask for a copy of all the bloods so you know what they've done. They look at this as a high indicator & then do further tests. I too have salivary gland problems as seen on scans but mild. Can I ask about the ventricular tachycardia? I've had that too. Diagnosed with at ARVC Cardiomyopathy. What is the explanation for the TC? You just need to make a list and be assertive with your specialist. Get copies of all your tests and reports. Ask questions! Where are you based? I had a rheumatologist who refused to do tests, told me nothing wrong with me & then said I probably have fibromyalgia. This is a small town. I had to go to London UCLH centre of excellence to get good care. They immediately did tests and found AMA positive, more tests and referral to Hepatologist plus looking st Sjögren's as they often coexist. Sounds like you've been through the ringer! I hope you get some resolve soon!

[Von007]

Hiya, 360? Wow bet that gave you a fright! There was no apparent explanation for the VT, I had the gland removed after 2 biopsies and the consultant told me i was looking at non-Hodgkin lymphoma but thankfully after removal it was clear much to his surprise (there's another story behind this). The op was carried out on a Tuesday, back in the next day to get the drain removed, then that Saturday evening I was feeling fine chatting away on the phone when suddenly I found it hard to breath and my heart was racing, thought I was taking a heart attack, the pain was like a fist of steel was being pushed through my chest THEN turned blue. They sent out and ambulance and when they got here they called a cardiac ambulance. The hospital kept asking me over and over had I 'taking anything' or was I drinking lots of red bull!

My gastro also thinks I have SS. I am from N.Ireland, female and 54. Where are you from and can i ask what led to your diagnosis for pbc? I have also been having urology problems from last October with lots of infections and waking up 2 or 3 times every night and a constant urgency and frequency and burning, do you suffer from this also?

I have my list ready and waiting and the question regarding my readings are at the top of it.

[Von007 in reply to Von007]

Sorry meant AS not AS.