Susan pbc patient

[Susanlynch]

Hello my name is Susan . PBC wow.It has been a experience.I am glad to have joined this sight Things now are making sense assuring me I wasn't crazy or lazy I am over 50 but have had other umbrellad symptoms for years and the itch is horrible fatigue omg but on the days you can PUT one foot in front of the other and live on !

[krazacg83]

Hi Susan. I'm Andrea. I just got diagnosed yesterday. I still haven't seen the specialist to find out what stage though. Did you just find out also? Its quite the shock!

[Susanlynch in reply to krazacg83]

I found out in August! Been active in participating pbc studies lectures ect my patience are short working on this take it one hour at a time my friends think I'm nuts which is why it's good to talk with others that live this life UC ,Davis is a good tool got lots of information .take a nap if you need one get dressed and wait for that little bit of energy to start s walk keep active if possible take care

[Hidden in reply to krazacg83]

Hello krazacg83.

I am in the UK, diagnosed in December 2010 aged 46. I've never been given a 'stage' in PBC. When I saw the consultant following diagnosis he just said I'd probably had PBC 'a few years'.

I was diagnosed without a liver biopsy due to itching intensely early 2010. I also had relevant blood work and antibodies of a high titre so this enabled diagnosis.

Quite frankly, I personally am not interested in this so-called staging. I am confident that a simple scan can give a pretty accurate picture.

You will need time to digest what you have got but at the same time if your bloods start to improve after starting urso then over time you see things a bit differently. I never took life for granted as I was widowed when I was only 29 and left with 2 young children but a few years prior my mother had died young (43). I decided I'd just crack on with living life, do what I want, change a few things and get on. I am going to deal with any issues as and when and not spend time thinking about them as they might never be and meanwhile that would be needless worrying. Fortunately my husband of just over a year when I was diagnosed said he was staying regardless and over time we have accepted it together.

[krazacg83 in reply to Hidden]

That is quite the story! Thank you for sharing! And I'm truly sorry about losing your husband and mother. I lost my mother to cancer when I was 19. I understand the hardship of losing a loved one completely. And you're right..you hav to live life to the fullest cause you're not guaranteed how much time you're given. Right now, I think I'm more so just trying to deal with the shock and handle all the anxiety of the unknown while I wait for answers

[Hidden]

HelloSudsnlynch.

I am now 52, not long to be 53 in a few months. I was 46 at diagnosis. I started itching 9 months prior to being informed I had PBC. Been diagnosed 6 years now, still cracking on with life and taking the urso.

I decided long since to get on with life, not worry and deal with issues as and when as these things might never be so not worth worrying prematurely.

I still itch late at night until around 6a.m. and it causes broken sleep but I'd rather be like I am now than during 2010 when I itched 24 hours a day and felt fit to drop all the time (was working full-time then). Taking the urso over time the itch started to lessen so hopefully it'll do the same for you. Fatigue I had in 2010 disappeared sometime 2011 but I did make some lifestyle changes and I think knowing you have been diagnosed with something you can then deal with it better.

Just takes time in the early days of diagnosis, the acceptance (I used to think that if I took the pills and the itch vanished I'd be cured!) and then making some slight alterations to life. I live a pretty normal life and hope to continue to do so for many years.

[moepag]

Welcome, Sudsnlynch! Glad you found this forum as I think you'll find there is a wealth of information and support to be found here. As much as you never want a diagnosis of liver disease, at least you know there's an explanation for feeling so unwell..and so unlike your usual self! I hope you've been started on Urso and that you respond well to it.

My best to you,

Maureen

[slck]

When I see posts for newly diagnosed people, I routinely reply citing the experience of my son, who although not having PBC, does have PSC (Primary Sclerosing Colangitis), a very similar liver condition that is also thought to be of an auto immune nature, as well as Ulcerative Colitis, another auto immune conditon. He has been successful in using diet, vitamins/supplements and most importantly Low Dose Naltrexone (LDN) to return to a normal condition. All his liver function values have returned to normal for about 1.5 years now, and all his inflammation markers are normal as well, and he is symptom free. Go the the LDN Foundation web site; read their materials and links to Dudley Delaney's web site and blog; and Google Dr. Burton Berkson and watch videos about him, particularly his 2009 presentation at a National Institute of Health conference, and also read his books on LDN, Alpha Lipoic Acid and B-Vitamins, (related diet strategies) and you will find his regimen of vitamin/supplements that improve your immune system, and the method of action of these items to help your body's immune system return to normal. Gluten and dairy free diet can help to reduce leaky gut and related intestinal irregularities that are typically at the root cause of many auto immune conditions. Some people also believe that a non-GMO diet will also help. Join the Yahoo LDN User Group and you will receive emails from LDN users and questions from inquirers about the application of this inexpensive and low risk/side effect drug in addressing a range of auto immune conditions and returning your body's immune system to normal or more normal condition. Many doctors do not know about LDN, or, since it is used "off label" for auto immune conditions, will not prescribe it, so do not be surprised if you get a negative reaction from your doctors. Find one who is LDN knowledgeable, or search the above resources about its availability not through your current doctor.

The vitamin/supplement regimen I refer to can be found by reading Dr. Burton Berkson's book on Alpha Lipoic Acid, as well as information about using Low Dose Naltrexone as an important means to re-regulating your immune system in Elaine Moore's book on the Promise of Low Dose Naltrexone Therapy.

It takes a lot of time and effort to do the research and investigation, but with main stream medicine offering very little help to halt the progression of many these auto immune diseases, I believe the above items offer a reasonable and low risk strategy to address auto immune conditions. You can contact me if you have any questions, and I will try to point you in the direction of additional resources that will help to answer them.

Warren

[fred6577]

Susan! I felt exactly the same when I got my diagnosis. I thought I was lazy, losing the plot, struggling to concentrate etc. Now I can see that I have been going slowly downhill since 2007. I thought it was all down to menopause. I went to see my doctor, but never really got anywhere. In March last year my knees were so painful I could not manage the many flights of stairs at work anymore. X-rays showed nothing and I decided the easiest thing would be to change my job. My boss was not helpful at all and I had no diagnosis, so felt unable to argue my case. Luckily I found another job quickly, and all is going well. At the same time I had blood tests to check hormones and this is when the liver function abnormalities were picked up. It took until November to see a consultant, and get a diagnosis. I am now on a gluten free diet and find this really helps my digestion and joint pain. I take vitamin supplements. I am starting to have good days now! No diet advice from my doctor, did my own research. I find stress and worry makes me feel awful, so I am taking it easy, pacing myself and treating myself well! Wishing you good health and a positive New Year x