New here! Question about Diagnosis

[KEB03]

Hello! Thanks for including me in your group!

A quick background on me: I am 37 years old, female. In 2014 I started getting sick with a range of symptoms, including fatigue, neuropathy, fainting, GI issues, etc. I have had what feels like every test on earth, and have been diagnosed with a number of things I don't really believe I have: epilepsy (currently on medication), Lyme disease (although tests were negative), and POTS (a form of dysautonomia). I also feel like I've been secretly diagnosed with "she's crazy"

In mid-March of this year, I got very sick with a flu-like illness that ended up lasting for weeks. I was in the hospital, and had 10 days of 104 degree fevers. They never figured out what the problem was, but one constant was that my liver enzymes were high. I was referred to a GI, who also specializes in liver conditions.

My results to this point are:

M2 Antibody -- positive at 29.9; ALP has stayed around 250; ALT around 230; AST around 150. My ANA was negative.

I have never had abnormal liver workups before this recent illness.

My doctor said he is hopeful this could all be from the unknown virus I had, and wants to wait 2 months (with bloodwork every 2 weeks) before doing a biopsy. He did tell me about PBC, though.

I understand why he wants to wait, but have also put myself into a total panic reading everything I can find on PBC. It seems unlikely that I would have a positive M2 + high ALP and not have the condition.

I realize you can't tell me for sure, but does anyone have any thoughts? Is it possible to have these blood results and NOT have PBC?

Or, if you can't tell me that, any advice on getting through the next 2 months would be appreciated! I'm really confused and scared.

Thank you

[EileenUSA]

Hi,

Wow you've been through a lot.. First I want to say that even if you do end up with PBC dx that with medication you can manage.. And there is more research and advances in treatment in the pipeline. As for positive AMA AND high ALP you are right those 2 are criteria for dx of PBC.

Now it is known from blood donor data that a certain percentage of people have positive AMA but don't have PBC.

So it sounds like your dr might think that the elevated blood labs ALP are a response to the virus and not necessarily mean PBC..

I understand the stress of the unknown and waiting 2 months for recheck of levels. Well if it is PBC waiting 8 weeks for retest before starting medication it probably isn't the worse thing--

I suppose they don't want to start you on meds for PBC without official dx.

Would you want to get another opinion sooner? Hang in there. Hope some of this is helpful.

[KEB03 in reply to EileenUSA]

Hi, thank you for your reply, and for all this information! You're correct, the doctor does not want to start me on meds until an official diagnosis. I suppose this is giving me some more time to wrap my head around the idea -- and maybe I'll be pleasantly surprised if it turns out to be negative. It's definitely good to know that waiting 2 months before starting meds is not a bad thing -- my concern is that I was going to ruin myself during the 2-month waiting period!

[ninjagirlwebb in reply to KEB03]

PBC is a slow progressing condition. 2 months won’t make the condition worse.

You are right that M2 is very specific to pbc. There are people with M2 antibodies who don’t develop the condition. Additionally there are other triggers that can elevate ALP. ALP is not liver specific; can also be thyroid/bone related.

Hep probably wants to see a trend of this before diagnosing.

Try not to worry so much, but I know being in this situation makes it hard to remain calm & the mind is all over the place.

Do something to distract yourself & keep positive.

Haley

[KEB03 in reply to ninjagirlwebb]

Thank you so much -- this is great to know! I feel awful reading all of your stories and complaining when I don't even know for sure yet. I'm am just not a patient person!

[ninjagirlwebb in reply to KEB03]

I don’t think anyone is all that patient when it involves our health. Most of us dislike waiting for test results. Hang in there! 😀

[Karaxxx]

Hi, sounds like you’ve had a rough time of it. I have been recently diagnosed after having other issues going on GI wise & PBC was found incidentally. I literally woke up one morning ill, completely out of the blue & have been on a roller coaster ride ever since for almost a year now, this test, that test. I felt like I was going mad! They’ve still not got to the bottom of my issues & I’m wondering if all my problems are in some way related. I am struggling with not having anyone to talk to, to go to for advice etc. Of course I have friends & family to off load to & they are great listeners. But I’m lacking in knowledge & no one seems to be able to answer any of the questions that I have. I’ve only seen a specialist once so far, I’m due in 2 weeks to go again & id be in there all day if I sat there asking everything that I want to know! Not one person I know has ever heard of PBC or knows anything about it. It’s very isolating & this group is great for support. I can’t answer your questions but wanted to let you know that you aren’t alone x

[KEB03 in reply to Karaxxx]

Thank you! I hope you find some answers soon. I definitely empathize with what you are going through!

[ENuk]

Just to reassure you I was going through diagnosis/medical assessments from Dec 2017 through to October 2018 before I was prescribed PBC medication.

My situation was strange as I had symptoms that they thought could be a rare cancer so I had several biopsies including a surgical biopsy as well as every possible scan and blood test.

In the end they settled on PBC and I felt grateful that it was "only" PBC. It is positive however that they rule out anything else that could be potentially more serious.

I am on Urso and recent blood tests seem to suggest I am responding well so there is lots to be positive about as advances in PBC mean it should be well managed. I find fatigue the most disabling part of PBC.

Distracting yourself is a good idea and also mindfulness as stress will make you feel worse.

Have you has scans? Fibroscan would help to determine any PBC progress so that might be a next step ahead of biopsy.

Btw I recently has flu/chest infection so I suspect we may be susceptible to inflamation.

Google doesn't help as it does appear out of date for the most recent prognosis on PBC.

[KEB03 in reply to ENuk]

Hi, thanks for all this information! I do not think I've had a fibroscan. I had a HIDA scan when I was in the hospital, but at that point they were looking at my gallbladder, not liver. It was normal, so I'm assuming that's good news. One of my main concerns was waiting two months -- that I would do more damage -- but it's good to know that's not necessarily the case. I'm not really dying to take more medication anyway And I'm very glad to hear you did not have cancer!

[MissusTee]

You also need to be positive for Igm if you have active PBC, it's worth getting that tested too.

[KEB03 in reply to MissusTee]

I will look into this, thanks!

[Londonjoanne]

I too had the she's crazy diagnosis after 5 years of tests including a wrong d diagnosis of lupus i have been diagnosed, I hope they have found a reason for your current illness, its sound like you have been through it, I was told I was depressed even though I was the happiest I had ever been in my life, it seems to be a trend with doctors whenever symptoms are unexplained by tex book diagnostic skills, you the patient must have a mental disorder which may be causing a psychosis induced illness.

[KEB03 in reply to Londonjoanne]

Yes, it’s so frustrating! I’ve just given up trying so many times because i feel like no one believes my symptoms are real. Thanks for sharing!

[Bajamama]

Hi. I may be on the wrong site for me...

I’m not sure what PBC is. I discovered this site while researching CBD & cirrhosis.

Can you please help me?

[DonnaBoll Administrator]

first of all, take a breath. I know this can be very scary stuff. An elevated AMA with elevated liver enzymes is enough for a PBC diagnosis in most cases. When doc use the word 'wait' it can very scary. Just remember that PBC is a slow progressing disease. Repeating lab work even every 1-3 months would make sense. Having a 'wait and see' approach is often necessary when we don't fit into that mold for an easy diagnosis. Read all you can from reputable sources... don't Google.. Use The PBC Foundation, American LIver Foundation, Mayo and Cleveland Clinics, and the Canadian PBC Society as well. Do you have Dr Jones' book? well worth getting it....