Primary Sclerosing Cholangitis (PSC) - Online Support Group
We are patients living with primary sclerosing cholangitis (PSC), here for you!
Hi
Last results from the spealist were no as good might need a stent, so had a MRI to see what's happening in there, results came back no don't need the stent YET, but over all results came back its worsened, again.
How have other people found the symptoms or any symptoms. I have been pretty sick most of my life so I find it hard to know when I am really feeling my worst and what's causing it.?
We live around 9 hours to the nearest major hospital I have to fly each time, we also have no family near by, my concern is if anything turns or I need surgery we will have no one to support. I'm not sure if it will go downhill in a few years or have another 10. Then the outcome of liver transplant, how much longer you live or quality of lifestyle.
Well that's enough for now, hope to hear some stories and advice.
Views: 95
Replies to This Discussion
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Permalink Reply by mflynn on -
Hi there, my husband has PSC and was diagnosed 17 years ago, he has had very few issues with the disease over the years, although he had an issue about 1 month ago and needed a stent to be put in. Since the stent went in all the symptoms have gone away. He went in for an MRI today. It seems that this disease progresses differently for everyone. Try and stay positive , although sometimes it is hard, especially when you are not feeling well. When were you first diagnosed. Are you taking any medications? URSO?
Take Care
Marcie
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Permalink Reply by Sue Nielsen on
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I had stents (changed every 3 months) for more than 5 years and it helped a lot - a very minor procedure.
I also check out clinicaltrials.com for latest research on PSC and have been dosing myself with DHA and curcumin for the associated ulcerative colitis. Either that or good luck but I have been pretty stable for almost 5 years (getting too old for a liver transplant)
Good luck
Sue
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