Diagnoses of PBC not making sense anymore

Hello @lcmcphee -- Welcome to Connect. I can certainly understand why you would feel frustrated. Here is a link on Mayo Clinic's website that describes the Test ID: RNP -- RNP Antibodies, IgG, Serum:

-- https://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/81357

There is also a page on Mayo's website that discusses Primary biliary cholangitis (PBC) that may be helpful to read through the diagnosis & treatment along with the lifestyle and home remedies and more here:
-- https://www.mayoclinic.org/diseases-conditions/primary-biliary-cholangitis-pbc/diagnosis-treatment/drc-20376880

I'm also tagging @rosemarya to see if she might have some suggestions. She has posted in an old discussion about PBC but it hasn't had any new posts since 2012:
-- https://connect.mayoclinic.org/comment/4920/bookmark/e6250d439c9f868fc53ca3800e7a41d943be7dd0ecfdda6ae585394ec5df74d5/

@lcmcphee did the rheumatologist describe the symptoms that would make him think you have MTCD? I would ask him to tell you his reasons as this might prompt you for some more why questions. There's nothing wrong with getting a second opinion if you feel you are not getting answers.

John

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Hello @lcmcphee,

I'd also like to introduce to a few members who've discussed autoimmune hepatitis – a type of autoimmune liver disease that sometimes occurs in patients with PBC. Please meet @luserm1, @atorset, @myminnie @gretagean, @mommynumberone, @avonlady38, @vmbreier, @eroch, @lady1994, @klisa24, @billylin, @lizhope33, @gabrella; I’m certain they would be able to offer more insight.

May I ask if your doctor has prescribed any medications or suggested any changes in diet and lifestyle to mangae this condition?

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@lcmcphee , I join John in extending a welcome to you. I see that you mentioned that you were diagnosed with PBC in Dec 2017. Some of your symptoms (fatigue and joint pain and swelling) are also mentioned in the link for PBC that John has included in his message.

I understand the frustration that you are experiencing. I was diagnosed with a liver disease PSC (Primary sclerosing cholangitis) It is also a disease that affects the bile ducts with some connection to autoimmune condition. My PCP, sent me to a gastroenterologist (GI) for treatment of the liver disease. Are you being treated/monitored by a GI for your PSC?

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I need advice! During my last pregnancy, at the age of 43, I experienced several episodes of a skin rash following sun exposure. Red, nickel-sized, raised welts on my upper arms, torso and back. Funny thing, the rash didn't itch rather it hurt deep in my tissue. I miscarried at 16-weeks, 8 weeks later I saw a Dermatologist and I just so happened to have this rash at the time of my appointment. The Dermatologist performed a skin biopsy. The results came back with a positive ANA 1:6.4, homogenous, all other "Antibodies" negative, except a high anticardiolipin IgM antibody. During my first trimester I had an elevated d-Dimer - 2.51(i.e, increase risk for a pulmonary embolism). CT scan was negative.
Fast forward 10 years: I have an official diagnosis of SubAcute Cutaneous Lupus, Fibromyalgia, Chronic Fatigue Syndrome, Osteoarthritis of my lower back/cervical spine, R Sciatica with radiculopathy and neuropathy, Chronic Kidney stones, proteinuria/hematuria, borderline thrombocytopenia, tendinitis of R shoulder/elbow, joint pain with morning stiffnes, PTSD encompassing insomnia/social behavior disorder/anxiety/major depressive disorder, mucosal sores, alopecia, hx of infections (e.g. urinary tract, kidney, candidiasis, bacterial vaginosis, chronic bronchitis, herpes zoster), metacarpalpharengeal and bilateral wrist neuropathy, occasional swelling in hands/feet, cognitive dysfunction (i.e, memory loss, inability to maintain focus/concentration, disorganization, low tolerance), headaches/migraines, dizziness with occasional vertigo and syncopal episodes, IBS, GERD, OSA with CPAP, and PLMD, Pleuritic chest pain, SOB, Premature Atrial Contractions, COPD, and decreased Diffusion Lung Capacity. The only symptom I do not have is "weight loss!" Go figure! Thanks menopause! Lol
I am a twin and my mother has Crohn's Disease. In the past 10 years I have seen a total of 5 Rheumatologists both in the private sector and within the VA healthcare system. That is where I am currently receiving my healthcare. I cannot get my Rheumatologist to listen to me regarding Systemic Lupus. What to do?

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I need advice! During my last pregnancy, at the age of 43, I experienced several episodes of a skin rash following sun exposure. Red, nickel-sized, raised welts on my upper arms, torso and back. Funny thing, the rash didn't itch rather it hurt deep in my tissue. I miscarried at 16-weeks, 8 weeks later I saw a Dermatologist and I just so happened to have this rash at the time of my appointment. The Dermatologist performed a skin biopsy. The results came back with a positive ANA 1:6.4, homogenous, all other "Antibodies" negative, except a high anticardiolipin IgM antibody. During my first trimester I had an elevated d-Dimer - 2.51(i.e, increase risk for a pulmonary embolism). CT scan was negative.
Fast forward 10 years: I have an official diagnosis of SubAcute Cutaneous Lupus, Fibromyalgia, Chronic Fatigue Syndrome, Osteoarthritis of my lower back/cervical spine, R Sciatica with radiculopathy and neuropathy, Chronic Kidney stones, proteinuria/hematuria, borderline thrombocytopenia, tendinitis of R shoulder/elbow, joint pain with morning stiffnes, PTSD encompassing insomnia/social behavior disorder/anxiety/major depressive disorder, mucosal sores, alopecia, hx of infections (e.g. urinary tract, kidney, candidiasis, bacterial vaginosis, chronic bronchitis, herpes zoster), metacarpalpharengeal and bilateral wrist neuropathy, occasional swelling in hands/feet, cognitive dysfunction (i.e, memory loss, inability to maintain focus/concentration, disorganization, low tolerance), headaches/migraines, dizziness with occasional vertigo and syncopal episodes, IBS, GERD, OSA with CPAP, and PLMD, Pleuritic chest pain, SOB, Premature Atrial Contractions, COPD, and decreased Diffusion Lung Capacity. The only symptom I do not have is "weight loss!" Go figure! Thanks menopause! Lol
I am a twin and my mother has Crohn's Disease. In the past 10 years I have seen a total of 5 Rheumatologists both in the private sector and within the VA healthcare system. That is where I am currently receiving my healthcare. I cannot get my Rheumatologist to listen to me regarding Systemic Lupus. What to do?

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