Exhausted And wish I had answers.... I'm new to all of this and would love to hear other similar stories or any advice would be great...

[Teri1755]

Hi I'm new to all this and this is the first time I've posted anything.

Im 50 years old and for the last year and a half I've had tests after tests.

They have known for the last year that something is wrong with my liver, my liver enzymes are crazy high.

I now have jaundice, itchy skin, sore achy legs like I ran a marathon (LOL).....

They thought I had cancer of the gallbladder and did an erpc and punctured my pancreas, it turned out I didn't have gallstones nor did I have cancer of the gallbladder.

I've had so many CT scans, MRIs, blood work after blood work. They've sent me to the cancer center and to gasterolgists in hope of getting answers.

All of this keeps dragging out. I've been out of work all the month of December bc of being in and out of the hospital with pancritis.

They have known all this time it was my liver, but I still have yet to be diagnosed. My gasterolgist feels it's some sort of non-alcohiloc cirrhosis. I'm not a drinker and was only a social drinker, which I dont even have a sip of alcohol now while I wait to be diagnosed.

I just had a liver biopsy this past Tuesday, 3 days ago, and I'm waiting for the results to come back in.

It's such a long exhausting process and I guess they have to rule out everything else.

All this started with my lymph nodes, and then they did a complete blood panel to find out it was my liver.

I was born with a blood disorder, ITP, and had my spleen removed when I was 13. now my platelets are extremely high and my wbc are high as well. Bcuz I dont have a spleen my liver is enlarged and has taken over some of the empty space where my spleen once was.

I am exhausted and just want answers.

But I guess I'll finally find out in the next couple days once the results come back from my liver biopsy, or at least I hope....

I'm nervous of what the results are going to tell and what the ending will be. I have no immune system do to not having a spleen.

Any similar stories or advice would be greatly appreciated.

Thank you in advance and I hope I didn't ramble too much.

[butterflyEi]

Hi Teri1755

Welcome to the group. Wow you have been through it and such a long time to find a diagnosis. It took about 10 years for me to get a diagnosis from the original symptoms but I had menopause problems at the same time and eventually had a hysterectomy. After a long time without specialist care I am now lucky to have a hepatologist who is thorough, caring and kind. PBC is still classified as rare/uncommon so getting a diagnosis can still be difficult.

The factors for diagnosis of PBC can be found on the PBC Foundation website in the member's section (free to join). The page for professionals gives an outline of diagnostic tools

pbcfoundation.org.uk/health...

PBCers.Org (American based) also has useful information and both PBC Foundation and PBCers.Org have a page on face book.

I wish you well for your diagnosis, come back and let us know how you get on.

best wishes

[Teri1755 in reply to butterflyEi]

Thank you butterflyEi I appreciate it. This site has been very beneficial since I joined and has eased my mind in knowing I'm not alone.

I honestly thought I was really sick and started preparing myself 'If something did happen to me'. I still have children at home and grandbabies that I want to live for and realized I'm not ready to go yet! I think the worst thing you can do is surf the web and self-diagnose yourself. It honestly has made things worse for me. I'm finished doing that....

But I now know, even though it is a rare condition, it's manageable and I will live a long life as long as I take care of myself and learn to accept this condition and tackle it head on.... which it sounds like you have.

You have been through alot by the sound of things, 10 years is quite a long time to deal with all the up a and downs and you seem very positive. I hope everything is better for you now that you are going to a specialists.

I'm not sure what kind of doctor a hepatologist is but I will def talk to my PCP at my next appointment.

Thank you for all the informative info, I will def check them out in the next couple days. I really appreciate all the positive energy you have...

I wish the best of luck to you my friend and I hope we can stay in touch.

Best wishes,

Teri

[butterflyEi in reply to Teri1755]

hi @Teri1755

I do try to stay positive but there are always the darker days

Just thought I would let you know that the hepatologist specialises in the liver whereas a gastroenterologist specializes in the diagnosis and treatment of diseases of the digestive system but often one will see a gastro specialist beforehand. I think it may be a bit different in the States to how it is here in the UK but basically both types of specialists may usually have the information we need.

best wishes to you also

[Teri1755 in reply to butterflyEi]

Thank you so much for your quick response back. I like my gastro doctor and feel confident that he will find whatever is wrong with me. He promised me he will get to the bottom of all this if i have faith in him, I feel that is so important. But I will be asking my PCP if I should seek further advice from a hepatologist.

Thanks again for all the detailed information. Hope yo talk to you soon. Best of luck to you and keep that inspiring positive energy that rubs off on others around you.

[PBCTracy]

Hello!This is a great place for answers and somebody to listen to.I recommend a Hepatologist.I think going to one has eased my anxiety.Some days I forget I have PBC.I also have Endometriosis.

[Teri1755 in reply to PBCTracy]

Hello Tracy... Thank you for your response. I'm not sure what a hepatologist specializes in but I will check into it at my next appointment with my PCP.

It all is so frustrating and I guess no one else understands what you are going through. I hear from everyone 'well you don't look sick'.... So it is nice being able to talk to people that actually know what your going through and who can sympathize. Just to go on here and read stories that are so similar to mine have been beneficial.

I wish the best of luck to you Tracy and thank you again for reaching out and easing my mind.

Your friend in PA,

Teri

[KevinHall10_ in reply to PBCTracy]

I have been having pelvic pain, i wonder if this is what i g ave. Im on fem vag insert tablets, but still have that pain. I also have a bad back, so who knows what is causing my pelvic pain????

[PBCTracy]

I am from PA!I now live in NW Ohio.I was diagnosed last May through a Endoscopy.

[Teri1755 in reply to PBCTracy]

Where in PA are you from if you don't mind me asking?

I had an ERCP in December, but they thought it was my gallbladder. The MRI showed cancer and gallstones, but when they did the scope and planned on putting a stent in, they thought my bile duct was blocked they didn't find cancer, or gallstones and punctured my pancreas. Which was a long recovery.

The doctor really thought that my gallbladder, bile ducts were the reason for my elevated liver enzymes.

I just had a liver biopsy 4 days ago so I'm hoping this will give Me a def diagnosis. My doctor is pretty sure its PBC bc I have all the symptoms.

It's just a waiting game now, but I'm frustrated and exhausted and just want results done. It seems like it's taking too long but I suppose they have to rule everything else out.

How long ago did you find out? Once you found out and a game plan was set into motion you were able to get back to feeling like your self?

I can't wait until I feel like myself again, I dont think I have for over a year.

[PBCTracy in reply to Teri1755]

Bedford Pennsylvania.Southern PA.

[Yankeerose3]

Hey, where in PA are you from? I grew up in Beaver County. A little town called Conway. It's about 30 minutes outside of Pittsburgh and Ohio. I moved to Virginia Beach, Va. in the 80's

I had a biopsy in 2013 and been on 1200 mg of URSO ever since. I been sick off and on for the last year with the flu, pneumonia, & bronchitis then my mom passed away so been very stressed out about that and my job. Stress makes things worst. In Dec. I started having pain in my right side, exhausted and now I get itching, dry eyes and pain in my joints. Had an MRI after getting bad results on an ultrasound to see why the pain. My GI Dr claims PBC don't cause pain so he said it must be just gas. I read it is a side effect and many here say it is too. I have been getting an ultrasound every 6 months and my PCP does blood work every 3-6 months. Otherwise, I just keep doing the best I can and try not to stress it and get depressed. I'm a diabetic and I have glaucoma, too. On lots of medicine and GI dr just added two more for the itching... Good luck to you. 🙏🙏

[Teri1755 in reply to Yankeerose3]

Hello Yankeerose3... I'm in Erie. I'm sure you'veheard of it be in so closeto Pittsburgh and maybe even passed through. We have beautiful beaches, our biggest tourist attraction.

I've heard of beaver county, but never been there. Virgina beach though is beautiful, good choice!

I am so sorry about your health and the passing of your mom. That had to ofbeen hard and i do believe stress does make things worse.

I have all the symptoms as you... pain in my joints where it hurts to walk after I get home from work, itchy skin that I now have scars on my arms and dry eyes as well, which I blamed it on my contacts until I recently read that is one of the side effects.

I also have jaundice, yellowing of my eyes and skin and my bilirubin in real high and high in my urine as well.

That's all you can do is do your best and keep your chin up. I kniw its hard by you can't let yourself get depressed. Maybe a support group would be something to consider. My kids and my boyfriend keep my chin up when i get discouraged or exhausted. And feel i can't do this anymore, they are my rocks.

I hope the best for you and hope things start looking up for you. Just your chin up and know that you've got a friend now in PA. I'm here if you ever need a shoulder my friend.

Best of luck to you,

Teri

[Yankeerose3 in reply to Teri1755]

Thank you. That's so sweet..

Yes, I know Erie well. Went there many times as a kid.

My grandmother is from there but moved way before I was born.

My grandparents had a house/ business in Tionesta, pa... On Route 62 and I had to stay with them every summer

[Teri1755 in reply to Yankeerose3]

Lol... every one around the area knows Erie. The mistake on the lake, or our crazy erie unpredictable weather, Smith hot dogs, or our 14 beautiful beaches right on the of lake Erie. Every one remembers dreary erie or has fond memories growing up here or spending summer here.

If you ever are back in the area let ke know and I'll show you erie now.

[Yankeerose3 in reply to Teri1755]

That would be awesome!! My grandparents moved from Tionesta in the in the late 70's. My grandfather passed away in 1978, I believe. He was well know when they lived up there. He owned "Tionesta Worm Farm" .

Dr's suggest he move up near Erie where the air was fresher. We had the steel mills in our area.

[KevinHall10_ in reply to Teri1755]

Hi teri, i am hung up on stages, i guess, but what stage did u get the jandice. Im interested in stages, because i watched my son die from cirrhosis. His was from drinking.,but i watch him go through stages and it was no fun.

[Teri1755 in reply to KevinHall10_]

Hi kevinhall10.... I am so sorry about your son that had to be the hardest thing as a parent.

I still do not know what stage I am in. They are sending me to a specialist in Pittsburgh hopefully I will find out then. I think i have had cirrhosis for years but recently found out.

4 months ago when my doctor started doing blood work bc my lymph nodes were enlarged thatis when I i started noticing signs of jaundice. First of course in my blood and urine, then the white of my eyes and now my skin has a yellow coloring to it.

I hope that helps you and i wish the best for you.

[KevinHall10_ in reply to Teri1755]

Thank you, keep me posted

[Teri1755 in reply to KevinHall10_]

I will!! I hope things get better for you and you find the answers you need. Best of luck

[PBCTracy in reply to Yankeerose3]

I grew up in Virginia Beach area when my Dad was in the Navy.

[Belliver]

Hi Teri1755! What a medical history! Are you having all these tests at same hospital? Hope so 'cause my advice is to have copies of ALL the tests/ reports you have had, organized in a binder. This way you have a copy of everything-- when you see any new doctor-- tell them they can copy anything they want only make sure they give it back !

If I were you, I would look into a referral to the Cleveland Clinic, wondering if a combined consult with a Hepatologist (liver) & a Hematologist (ITP/spleen) would help. Sometimes you can just send the test reports, etc for a consult.

You already have such an unusual medical history, PBC is rare, so is ITP, sure hope you feeling bit better. Has GI said anything about taking Urso? ( helps liver). I used to do ultrasound-- have heard that splenic tissue can regrow ( just like tonsils) , (sometimes tiny, tiny bit not removed) , spleen & liver very similar appearance on ultrasound & sometimes on CT scan-- not saying that's what has happened, both diseases can affect platelets. I do know that there are certain gamma globulin injections that can be given for help in immune compromise situations. (before Hep A vaccination, my mother made my siblings & me get a gamma globulin injection for protection as a cousin had contracted Hepatitis A).....

When I first diagnosed with PBC, I was very fatigued for a time, never yellow but bilirubin on high side, all LFT's high, GGT high, , AMA+, ASMA+. My liver did NOT like biopsy- had RUQ pain on/off for months afterwards, still have to brace my side with a pillow on long car trips (think the vibration makes liver cranky)( been 12 years-- liver hasn't forgotten). I think that the pancreas is also a very sensitive organ & takes time to settle down , try to eat a bland, low fat , easily digested diet ,e.g. , white fish, white chicken instead of beef, & in small amounts- perhaps hospital has a dietitian on staff that could help? Hope this has helped a bit & hope you keep us posted on how you doing. Best wishes!

[Teri1755 in reply to Belliver]

Hello Belliver...

Yes, I have been receiving all my care at upmc, all the doctors are in the same hospital. Which is beneficial, i also have a patient portal that i can view along with all my doctors.

You sure have helped your very knowledgeable and i will def take your advice. Thank you for all the information and your awesome response

I did get my results back today from biopsy and it is confirmed I do in fact have PBC.

They are sending me to Pittsburg to meet with a Hepotologist and starting me on pretisone and urso. My insurance doesn't won't cover me if i go through Cleveland clinic.

I have been seeing a hepatologist at the cancer center which I see next in May. He is very thorough and keeping a very close eye on my platelets and Monitoring my lymph nodes under CT Scans.

It sounds like you have been through your share of ups and downs as well. Does it get easier? I'm so scared of the out come but I see all this possiblycan be controlled with proper meds and diet and doctors. I have so many symptoms right now, I could go on and on .... Does urso help control the symptoms of cirrhosis and high liver enzymes?

And yes I actually have started a binder of all my paperwork, that's a good idea in helping me stay organized.

Thank you so much for all the information, I look forward to talking with you more.

I hope you are feeling better and best of luck to you.