Changes and advances in pbc diagnosis -pra... - PBC Foundation

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Changes and advances in pbc diagnosis -praise be. Hallelujah!!

boneytoys profile image

I just tripped over A long post by Robert for the pbc foundation which talked about the way information has changed and how much pbc is not a death sentence now or ever!

I was diagnosed ten years ago

My physician - a woman - told me over the phone - yes I pestered her for a diagnosis but to this day I’m angry because her ego told me that prematurely and she left me to google and discovee the worst possible scenarios ...

The agony and tears - alone as I read it up. When I finally got her , after a liver biopsy , and with family as support , she had on her hands the same google print out that she then slowly went through with all the feared outcomes . As it was 25 pages long ( I swear) she often said blah blah..,

I reeled our ofvthat office crying and part of that was that awful life expectancy from diagnosis stuff and she let me go . The next time I saw her she bade me fare well as she was off to work In Another country. I did get out of her the name of gastro specialist which I see privately once a year who though in his mid 60s is a kind considered. Careful and informed man . Lucky me but I will never forget that day in her office and I realise how lucky I wS to find the nuturing pbc Foundation and the extended family therein. It certainly saved and continues to keep me well informed and reasoned in my approach to MY pbc all the way from New Zealand

Thanks be

16 Replies

Hi, We did get bad info all those years ago, I think a lot of the medical field did not know much about PBC. Are you a member of the PBC Australian & NZ Facebook page. We have a few from New Zealand.

Cheers

Doreen

boneytoys profile image
boneytoys in reply to DoreenD

Yes I am

From blenheim nz

I had a pretty bad experience during my diagnosis as well. Blood test results ignored at first then (18 months after the test) seeing the doctors eyes widen as he saw AMA had been detected in my blood. He asked how my joints and liver were with giving me no information as to why he was asking. I had to google mitochondrial antibody when I got back to work and the first site I went to was Wikipedia where I read I had a 5 year life expectancy! Then the same doctor dragged his heels getting me a gastro app. Totally useless.

Thankfully things have improved since then!

I was told 4 years old I have pbc the doctor told me it will probably kill you take these tablets and sent me on my way, has I was walking out shocked a nurse said google it. I was crying because that was telling I’m going to die. I was heartbroken I have 3 children 6 grandchildren and thinking I’m not going to be here for them. The doctor I was seeing didn’t have a clue about pbc. I am with a wonderful doctor and I’m doing just fine. There is still a lot of medical staff that don’t know much about pbc.

ninjagirlwebb profile image
ninjagirlwebb in reply to Dese

Wow...I am speechless. I just wonder why the doctors who don’t know anything about it just say, I don’t know anything about this. Let me get you to a liver specialist to get a better assessment. That would be the right thing to do instead of what you went through.

So glad you have a great doctor looking out for you now!

I do

He checks me internally both ends

My bone density

And other tests

Thanks

I'm happy you feel that this not a life sentence. I feel since the itching started, it truly is. I normally am a positive person but have become so depressed with this itch, that there are days I honestly don't want to do this life anymore. When I have a day without itch, I thank God for it! Ahh, the little things we take for granted. They need to find a a cure for this and how to stop the horrible itch. My quality of life has gone down so much with the itching. I cannot make any type of plans to go anywhere because if the itching starts, I am doomed for that day/evening :( I still don't give up and am trying to find my own cure though :) Take care.

boneytoys profile image
boneytoys in reply to donna01

Poor you

Sorry

That’s horrible for you.

It can be a reason for transplant if it becomes unbearable I’m told

Take care

June9961 profile image
June9961 in reply to boneytoys

Hi you are correct. That was why my sister was given a transplant. Her skin was broken and bleeding with scratching. Mercifully, I don't have that symptom and the rest I do have are bearable.

Thank you. I don't believe here in the U.S we can get transplant just for the itch. Waiting list is too long for people with other liver complications. I just wish I knew what caused this as I was diagnosed 5 years ago and this just started in last 7 or 8 months. It goes on for about 12 hours a day! The lack of sleep is taking a toll on me

boneytoys profile image
boneytoys in reply to donna01

Read butterflye1 for itch advice

Good kuck

Morning....I haven't itched in about a year. Doesn't seem to be a rhyme or reason for it to start and stop. Mine was starting at 8pm for months. I dreaded looking at the clock. Western medicine told me nothing, Eastern Medicine said it was liver meridian, Naturopathic's thought food related. After lots of time and thousands of dollars spent, years denying many foods, I began to see a correlation in my life. I had cumulative stress brought on by several major situations in my life. there was a huge domino affect of life events within about a year. So, after much suffering, I did the only thing I could do...gave it all up to the Universe. Some call it God, higher power, pure source. I just knew I couldn't handle it alone. So every time the clock neared 8pm, I ask the Universe for assistance. The "teachers" came in ways I didn't expect. I started using baking soda in water with lemon juice, I took baking soda baths in lukewarm water. I meditated. I used cold wash rags or frozen bag of veggies to sooth the itch. Then I noticed that all the giving it to the Universe put me in a place of acceptance with my life situation...the itching slowed down, my stress levels evened out.

I do eat very clean....nothing processed, no alcohol, no gluten, dairy, soy, corn, sugar, peanuts, eggs. I do not do well of animal products, so I gave those up too. I take my green drinks, supplements, use organic skin products, lead a fairly calm life most days.

My highest hope is that you are able to find the combination of things that could be adding to your itch. It could be that it is what it is and nothing will change it. I pray not. But i do know that when I'm closer to my God, that life seems to go smoother

boneytoys profile image
boneytoys in reply to mrspeffer

Sounds like you’ve come to it in your own way....as I have

Beautiful way to say it🦋 and I agree.

Irisw profile image
Irisw in reply to mrspeffer

Breakfast ideas? I wonder if eggs are hurting me?

I too have issues with eggs. I buy soy free eggs, but I have to eat them quite sparingly. I drink protein shakes frequently for breakfast. Sometimes a green smoothie. I love oatmeal made with coconut milk, but it's grains. Breakfast used to be fun. Captain Crunch! Eating Paleo is a challenge unless you can tolerate a steak in the morning. I need thoughts on this too. There are some Paleo breads that might make a good French toast.

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