Seeing dr for possible diagnosis today... stressed

[Flowerwh]

Hello,

I am in Canada near Toronto. I have had abnormal liver blood work for the past year. Last two blood tests found I am testing positive for ANA and AMA. My blood work shows ALP and GGT raised. I have pain near my liver and some itchiness. Right now I am off to see my Gastro to discuss those last results for the first time. I have been stressing for two weeks about this, since I saw the results for positive AMA. I found this group and have read a number of posts. It’s been very helpful and comforting although I am still quite worried. I hope my dr. will be able to help me. Although it seems from my blood work that it’s almost certainly PBC. I am just really worried about how my life is going to be affected. Wish me luck on a long drive to Toronto. I let you know how it turns out.

[ninjagirlwebb]

If you are in the early stages of pbc, urso will help slow its progression. You will be okay as long as you respond to urso.

While some patients here are under the care of a gastroenterologist or primary care doctor, if you have access to a hepatologist, make sure he/she is part of your medical team.

You will be fine. Work with a doctor who listens, answers your questions & has pbc expertise. Once you have that rapport, you can just relax & have him/her manage the condition on your behalf. Leave the worrying to your doctors & focus on living your life!

Hope you have a good appointment!

[Flowerwh in reply to ninjagirlwebb]

Thanks for your reply. I will take your advice. I’m going to be positive.

[Flowerwh]

Diagnosis was confirmed at appointment. I am being referred to a liver specialist but it may be months before I am seen. Doctor said it is not urgent. Only alp and ggt are high. All other blood tests are normal and my ultrasound showed nothing. More waiting.

[ninjagirlwebb in reply to Flowerwh]

Since you were already diagnosed, they should have you on urso. I was put on it right away, but I was diagnosed by a hepatologist. Urso can normalize both alp & ggt. It is very positive that everything else is normal. You probably caught this early so that is really good.

You will be fine!!!

[ninjagirlwebb in reply to Flowerwh]

This should help you understand the diagnosis & management of pbc.

easl.eu/research/our-contri...

[Flowerwh in reply to ninjagirlwebb]

Thanks! This will be very helpful. I can share with my husband and kids. I haven’t told my kids yet 21 and 16 years old. I want to make sure I give them the news with a positive slant... not to alarm them.

At least I know why I have felt so tired. Not just getting old.

[ninjagirlwebb in reply to Flowerwh]

My doctor told me to think of the meds as taking vitamins. Also with early treatment, pbc patients have the same life expectancy as the normal population. You just have to take a few more tests & check in with doctor every few months. It’s gonna be okay.

[YvonneGS]

Be sure to contact the Canadian PBC Society to gain valuable info. Here is the link: pbc-society.ca/ I agree that you should be put on Urso, so ask your doc about that. PBC is not a death sentence. Most people die with PBC, not from it, so take heart! Get more info and then talk to your hubby. He needs to be on board to support you in this. This group and the Facebook groups are wonderful supports too! Wishing you the best...

[Flowerwh in reply to YvonneGS]

Thanks so much. I feel better with all these responses.

[Flowerwh]

Hi,

Thanks for you support. I will definitely check out the site and once I start treatments get more involved in this and other support groups. My husband has multiple sclerosis so he understands the randomness of it all and the unpredictable part of autoimmune disorders. I may make an appointment with my GP to ask her about the medication. She is great and always takes her time with me. Plus she needs to know all about this diagnosis. I’m not sure if it’s been communicated back to her yet. Thanks again.

[Ellyne]

Maybe you could call back the last dr. you just saw and ask him to prescribe Urso so you do not have to wait months for the Hepatologist to do the same thing. That is what my Gastroenterologist did.

[ninjagirlwebb]

Or your GP can prescribe urso for you. Dosage is based on your weight.

[Flowerwh]

Appointment made to see GP next week. She is going to research a bit and I am sure she will get me started on Urso. I have had her for 25 years. She is the best. Thanks for all your advice. I’m still freaking out but in a more purposeful way. I have a disabled husband two kids and elderly parents who need me sane and functional.

[ninjagirlwebb]

You have our support to overcome this challenge. You will do fine especially with an exceptional GP. Hugs.