Two Diagnosis: Hello, I'm new to the site. I... - PBC Foundation

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Two Diagnosis

roseygirl profile image

Hello, I'm new to the site. I was diagnosed with PBC about a year ago. I've recently changed primary care doctors and on my first visit, he was dismissing everything that I was telling him about how my body aches and how tired I am. He said that it's because I work night shift. I told him that I had been working nights for 11yrs now and I wasn't like this at first. Has anyone else gotten two different diagnosis that is from one end of the spectrum to the other? Frustrated roseygirl.

7 Replies

I was diagnosed with pbc by a hepatologist not a primary doctor

You need to see a hepatologist

Hello I was diagnosed with PBC about 12 years ago but then later with sjogrens and vasculitis.If you don't think pbc explains all your symptoms I would ask to see a rheumatologist as well so they can look into it for you.

Hi roseygirl not sure which country you are in but if it is at all possible can you change your primary care doctor. If he is dismissive then I am thinking that he will not be much help to you now or in the future. Do you have specialist care (hepatologist) for your PBC? If you do maybe you could disuss other symptoms with him. Also if you are a member of the PBC Foundation (free to join) you can find information on their web site about symptoms and guidelines for management of PBC. From what I have read over the years over the different forum aches and pains are quite common in our community and fatigue is a recognised but not yet treatable symptom of PBC. Hope this is of some help to you.

best wishes

If at all possible change your primary care physician. I went through so many doctors over a 20 year span who were dismissive, referred me to psychologist, ordered anti depressants etc.

Finally, I found a gem in 2010. At first, I was Leary of trusting another doctor, but within a few visits she had me. I was not being treated correctly and she changed all that.

Funny, although she is a Primary Physician she had noted in my chart very early on “watch for PBC”. I had to get copies of all records when she changed offices and I needed for insurance purposes. For over a year she said I want a liver biopsy, I thought what? I don’t drink or do drugs And I pushed her off! Until I had a gall bladder attack, so I thought, the surgeon removed the GB and took a Snippet of the liver. The biopsy showed cirrhosis. Then we searched for a good GI or HEP. That was 2012, I learned finding a doctor who knew PBC was not very easy.

I went through three of tHem! I ended up with an amazing GI who I was seeing to just get a colonoscopy. He took one look at me and said you have PBC and Scleroderma. Both rare, but he knew both....I was Impressed, but when the fellow he was working with was able to do the same thing I was in awe of this GI and training of new to be doctors; after witnessing his bed side manner and flexibility I left the HEP I had been seeing. Also, he did an EDG at same time of the colony’s, she had never done an EDG. Finally, I am so thrilled with my team of doctors!

She was a top HEP indeed, but her real expertise w in hepatitis. She was not flexible in the least either. My thyroid numbers shot way up, my weight went up, itching became worse and nauseous. Oh and I gained 30 pounds, All within the first 5-6.weeks. All she said was it is not the URSO....I stayed on URSO for over a year, then my new GI allowed me to try going off it. His take and mine too, was everyone is different and it seems the URSO works best in early stage, not the last stage like me.

So after this big long comment, my point is just find a doctor you are comfortable with and who knows PBC. It really does help.

Currently, I am being evaluated for a transplant and this team of doctors and nurse are also amazing! I know I am ingood hands. Knowing and feeling that is huge.

Good luck finding the right doctor for you.

Yankeerose3 profile image
Yankeerose3 in reply to Suekloo

Where do you live? What a blessing to have a knowledgeable dr

Are you under the care of a hepatologist? Maybe you can ask him/her to recommend a primary care doctor for you who is familiar with pbc & won’t dismiss your symptoms. Your pcp should work with your hepatologist to manage your medical needs.

hi roseygirl , i think you will find that pbc and arthritis are related , if you have one of them you will no doubt have the other .I was diagnosed

with ankylosing spondylitis at the age of 28 , (a form of arthritis ) some years later pbc ( had that 10 yrs) and recently under active thyroid ang hiatus hernia .All , i have learned are linked .Auto Immune diseases .I google everything to try to get answers , good luck n stay happy .Merry xmas

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