Symptoms.s before diagnosis

[Whoami76]

Hey, before you were diagnosed, what were your symptoms? I went to the Dr's because I have a painless hard lump on the right side of my neck, exhaustion, and pain in the back of my neck,shoulders, back and hips. My hands/fingers also seize a couple of times a day. I had my bloods taken and IgM is more than double what it should be and a couple of others were slightly out of range. Not had follow up bloods yet as Dr wants to wait 4 weeks. Has anyone experienced similar please?

[Kakey]

Not at all.

[Whoami76 in reply to Kakey]

Ahh, okay, thank you

[gwillistexas]

I had no symptoms prior to diagnosis. My internist ran an immunofixation panel in 2019. My IgM was twice normal. My hepatologist repeated it in 2020 and it had gone up more. I was referred to a hematologist. He retested at 6 months twice, and now will retest one year. It is still too high but he isn’t alarmed to the point of a bone marrow biopsy.

[Whoami76 in reply to gwillistexas]

Thank you 😊

[ninjagirlwebb]

I had slightly elevated LFTs which triggered further tests and my immuglobin m and g were way off. Later I was diagnosed with pbc.

[Whoami76 in reply to ninjagirlwebb]

Thank you 😊

[Hidden]

Terrible itching, I was pregnant at the time so it was picked up on very quickly. I was told if I hadn’t been pregnant I’d probably still be living with PBC without knowing which is a scary thought!

[butterflyEi]

I remember having heavy legs but put it down to age. Then came a difficult menopause and after my first complaint of itching and tiredness about 9 or 10 years later I had my diagnosis when bloods were taken prior to a hysterectomy. All a long time ago now.

[IAmTheGlue]

I was very, very sick. I was pregnant, had been clawing my skin off itching for months. My Urine was like cola, my stools almost white. I was yellow like a lemon and swollen up like a balloon. I nearly died.

My baby almost died and actually has a global developmental delay that may be related to my illness while carrying him.

I did not get diagnosed until after delivery. I had him the day he turned 36 weeks because they were trying to get his lungs strong enough and not let me get too sick. Pretty horrible time. My uterus was jaundiced, my amniotic fluid was yellow.

Pleasant bit though… we are both still alive and he is getting ready to turn 4! He is the light of my life and I’m so very thankful to have him.

[Odieweb]

My symptoms were tiredness ongoing, the doctor ran tests and founded liver issues, referred me to the specialists, who ran further tests before diagnosis. And looking back I think I also had hair loss, some itchiness and swollen ankles. I was in denial at first, until about 9 months later it was confirmed by a specialist. I've been on URSO since and numbers are good, still feel tiredness though as the main symptom.

[Jnuttall]

I had chest pain’s at night when laid down and back pain , started having tests snd was told I had gallstones but after further blood tests PBC was diagnosed... started on Urso and fingers crossed ok since although I don’t sleep well but that may not be connected 🤷‍♀️

[Whoami76 in reply to Jnuttall]

Thank you 😊

[HopeLoveAndScience]

Flare ups of joint pain and stiffness, a bizarre rash on my neck and chest that left the dermatologist stumped, ocular auras , itching and steadily rising liver enzymes, My primary care physician said they not related and that I should have my gallbladder removed. That changed nothing., except to convince me to do the research myself, change doctors and figure it out. That led me to a wonderful hepatologist and successful treatment with Urso and minor lifestyle changes. No symptoms and good numbers as long as I stick with the program.

[Stub007]

I was unaware of any symptoms prior to diagnosis.

[Roz49]

It started off with anxiety and depression, I was extremely tired all the time , I would come out in a rash occasionally, gastric problems, joint pain , Due to the depression I had blood tests, my liver enzymes were a whooping 1300 , loads of blood tests later, ultrasound scans, fibroscans I got my diagnosis within 4 months.

[Ktltel]

Hi, I had my appendix out 14 yrs ago and my doctor said he noticed in my labs that my Alk-phos was elavated. That's it. ZERO follow up. Then, 4 1/2 years ago a bout with gastritis sent me to the ER. Gastroenterologist did extensive labs, ran an AMA-M2 test and it was "positive." So, raised Alk-phos and a positive AMA-M2 = PBC. Symptoms? Fatigue and dry eyes.

Stella