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I have been going through lots of blood tests because of elevated Liver Enzymes. My doc. finally did a Liver Biopsy last month, and after a second opinion, I have been diagnosed with Primary Biliary Cirrhosis. I am doing as much research as I can to find out as much as I can about this (rare) disease. What I have learned so far, is that I am in the very early stages. It is a vey slow progressing disease. Medication helps slow it further or even halt it's progression.
The not knowing, never having heard of the disease.....that is the scary stuff. I feel fine, which most do. But, this diagnosis might explain some other things that have been going on. If you know anything about PBC, let me know where I can look to get more information.
Thanks, :hug:
pandamac
Teddies to TreasureOh Ellen-I'm so sorry to hear of your illness and will pray for you.There are so many scary illnesses now a days.When I had breast cancer I found that it was helpful to learn everything I could about the disease and to keep informed.I have survived for 7 years now and still stay involved.I will certainly try to find out info for you but I would try to "google" the name of the disease I'll bet that you will find tons of info on the net.Please stay strong and keep a positive attitude and let us know how you are doing. :pray: :pray: :pray: Sincerely Jane D.
Back Road BearsEllen,
I don't where to look specifically for PBC but we've found the Mayo Clinic's website helpful with all of my dad's illnesses. here's a link to their site and info on PBC.... didn't read through.... not sure how helpful it will be!
http://www.mayoclinic.com/health/primar … is/DS00604
Good for you for doing all the research you can. It's encouraging to know that there is medication that can really make a difference and I'm glad youa re feeling OK.
Jellybelly BearsAnother great site is one that Dilu gave me as I've been going through some scary stuff lately. Its a little technical but really tells you whats what without too much hallabaloo. http://profreg.medscape.com/px/getlogin.do You need to sign up but its free and really worth it, especially for rare diseases.
The other really important piece of advice I can give you is learn learn learn...doctors don't and can't know everything, I often bring my doctors bits of information and they find it really helpful. Also, join chat groups...fellow suffers have experience and will be able to help in ways that medical professionals cannot. Also they will know lots of tips and also emotional stuff that you will go through, I've learnt more from fellow sufferers than doctors or my own research alone.
Hugs, :hug: :hug: please trust me, nothing is as scary once you learn more about it and you've given it time to adjust and sink in...you've made a huge step forward in getting your condition diagnosed, and it is really positive that you are in the early stages...we live in a really good time to be ill (if there is any) the internet is a huge source of information and support and advances are being made in medicine every day. Hugest hugs...please write if I can help Ellen. :hug: :hug:
Chaska, MinnesotaDear Ellen: I'm sorry you have to deal with this illness. Like the others, google it and see what pops up. I would suggest you make a list of questions and take them to your doctor.
thank care of yourself
Past Time BearsSo sorry about this medical condition, Ellen . . . I do hope it will cause you few problems and that treatment will stop its course. Wishing you lots of luck! Hugs,
Posts: 2,203Please know that we are here to support you. Health related issues are never fun. I will do what I can.
Bears by JodiSo sorry to hear of your illness Ellen and praying that you will be able to find the treatment that will help you, stay well.
Hugs
Carolyn
ellen - can i ask how much water you drink ?
hugs - i hope you find more support soon
knowledge help comfort you
cat xxx
Bearz by IlzeI'm so sorry to hear about your illness and I will also most certainly be praying for you! I can only imagen how scary this must be for you right now, but look on the bright side, at least they caught it early and they can start treating it right away. Sending lots of positive thoughts your way!!
To answer your quetion Cat, somedays I drink about 8 glasses of water, other days, only 2....but I am always drinking something, water, juice, iced tea or hot tea....right now I am drinking a "Smoothie" for my lunch.
Thanks for all the prayers. I did get onto a PBC chat page, haven't seen too much activity there yet, but I am sure it will start up soon.
Thanks for the links....I did get most of the inofrmation I have now off the mayo site. They tend to tell you sympotms, which I don't have.....but they do tell about the disease which sounds really scary, hopefully this chat page will ease the scare............
Ellen
hope the chat helps soon ellen
good for you drinking your 8 glasses
try to do it everyday !
ive stopped buying headache pills afteter doing some reading up about water
instaed i try to push thru the headache with water ...
i was on a mailing list for kombucha tea - a health drink - i stil brew the tea as it helped hubby and his ME/CFS
they also were big on drinking ones water allowance !
out bodies have a lot of stuff do deal with and water helps with the flushing !
sorry - my pet subject !
hugs
cat xxx
OxfordOh Ellen, so sorry to hear about your condition. :hug: :hug: :hug: Sending you best wishes and pray you will find the right treatment :hug: :hug: :hug:
Beary hugs
Celena x
Teddybears SwedenSending you my prayers :hug:
Matilda Huggington-beareI know how scary it can be. The NOT KNOWING.
With the knowledge that you have just gained I'm sure you will proceed well with this disease and come out the other end with flying colours.
I'm sending lots of positive vibes your way. 
