Primary sclerosing cholangitis

Yes, my daughter.

@mkempson42 this link is to a previous discussion on PSC. It isn’t long but you may find some helpful information.
https://connect.mayoclinic.org/discussion/psc/
Has your doctor mentioned what treatment he recommends for you?

@mkempson42, Hi Marcy, I was diagnosed with PSC nearly 20 years ago. The diagnosis was verified by an ERCP with dye after many other liver diseases had been ruled out. I do have a few autoimmune conditions in my family history plus I have vitiligo which pointed my gastroenterologist to a hepatologist who made the diagnosis. My liver failed and I had a transplant in 2009.
I look forward to chatting with you in PSC link that Becky has shared.

Marcy, Have you been diagnosed? Are you having symptoms? What would you like to ask or talk about regarding PSC?

@sandyjr, It has been awhile since I've seen any updates about your daughter. How is she? Did she locate a doctor to help her with her bothersome symptoms?

Well not exactly bc this is how it went. As if living with undiagnosed illness isn't bad enough and keep holding onto hope that I can get a possible diagnosis and treatment plan started and maybe living life with a better outlook and start enjoying it again bc it's pretty grim as of now. Life knocks me down again...

@mkempson42 Have you not been able to get a diagnosis yet? Have you found a good gastroenterologist? Here is a link to Genetic and Rare Diseases website. They are able to help most people find a good doctor.
https://rarediseases.info.nih.gov/contact/
Will you let me know what they are able to do for you?

I thought I found someone who maybe possibly diagnosed me. He was to be my my new primary who also specializes in internal medicine. I've been waiting a month to see him as the soonest because of being a new patient. The morning of my appointment I got a call from his office stating the appointment was canceled and I have to reschedule due to a meeting he had to attend. Next available is in September...no sooner.

@mkempson42, Good Morning, and I hope that you are successful in scheduling your September appointment. I already shared a brief look at my PSC diagnosis in a previous post. And I want to share this link with you as you prepare for your visit with the new doctor.

Primary Sclerosing Cholangitis - PSC
https://www.mayoclinic.org/diseases-conditions/primary-sclerosing-cholangitis/symptoms-causes/syc-20355797
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@mkempson42 - What lead you to suspct that you might have PSC?

The PSC link above did not open for me. I was road n 2021 I had NAFLD, PBC and Cirrhosis. I have hypothyroidism, osteopenia and restless leg, some fatigue otherwise asymptomatic. In April I had a GI hemorrhage not sure what caused that, and still waiting for new GI to do colonoscopy and endoscopy in September.

@gema98, Thank you for letting me know that it did not work for you because i didn't post the complete link!
- Primary Sclerosing Cholangitis – PSC
https://www.mayoclinic.org/diseases-conditions/primary-sclerosing-cholangitis/symptoms-causes/syc-20355797