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NASH and Cryptogenic Sclerosing Hepatitis

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Posted 7/20/2008 1:58 AM (GMT 0)
This is all new to me.  I am a 46 year old woman who has been relativly healthy all my life.  I have been diagnosed with NASH and Cryptogenic Sclerosing Hepatitis.  No A,B or C.  Apparently there is no treatment for this and at this stage-2-No information on possible progression.  I am dealing with enlarged cerotic liver and enlarged spleen.  Next visit in 6 months for follow up ct scan and 2nd biopsy.  Dr. says I cant have many more because of scarring and complications.  Anyone know anything about either condition? He said I can live a long time with this or transplant in 2 to 3 years.  If I think about it long enough I can become a bit frightened, but I also know I'm in God's hands and that helps lots.
Posted 7/20/2008 3:38 AM (GMT 0)
inGodshands, welcome to the forum.  As you may know, NASH is an acronym for nonalcoholic steatohepatitis.  Basically, it is a fatty liver with inflammation that can progress to cirrhosis, not caused by alcohol.  Here is a link to some very good information on NASH:

http://digestive.niddk.nih.gov/ddiseases/pubs/nash/

I did not find info on cryptogenic sclerosing hepatitis, but rather on crytogenic sclerosing cholangitis, which is inflammation of the bile ducts with no specific cause.  Here is a link to info on that:

http://www.righthealth.com/Health/Sclerosing_Cholangitis_Symptoms-Diseases__and_Causes-Primary_Sclerosing_Cholangitis-s

I do not recall anyone posting about either of these conditions, but perhaps someone out there has had some experience with them.

I hope the above links will hold the information you seek.

Connie

Posted 7/20/2008 4:44 AM (GMT 0)
Connie,

Thanks so much for the info. Its more than I knew this morning and is a comfort.  I spent so long trying to find out why I was so tired and lost 75 lbs in 10 months without dieting and the doctors kept saying I was fine until my husbands pulmonologist ran liver function and panel.  Just knowing helps make things easier to live with.  Talk later. and thanks again.

Posted 7/20/2008 5:05 AM (GMT 0)
inGodshands, Just wanted to welcome you to the forum. I hope that you find the answers that you are looking for. If you ever need someone to listen, this is a great place for that. There are many caring people here that can help you through tough times.
Posted 7/20/2008 12:18 PM (GMT 0)
Hi inGodshands and Welcome to Healingwell

I personally do not have expereince with NASH however I do know someone that has the disorder. It seems that it is controllable for some people through diet. Your doctor should be able to give you some information on dietary restrictions or increases that maybe able to help slow down the progression of the disease. I don't know how bad or what stage he was in but he does not take any medications for that disorder. I am so sorry that yo are having to deal with all this.

Good luck in your search for knowledge.

Lucy
Posted 7/20/2008 12:49 PM (GMT 0)
You might want to post a thread with PSC in the title on the Ulcerative Colitis board. I believe on of the posters there has been diagnosed with PSC, and may be able to help you.
Posted 7/21/2008 4:44 AM (GMT 0)
The dietary changes you are talking about are no red meat, pork, or chicken. White fish is ok but otherwise vegan is recommended. I take vitamin c,e and l-Argenine and milk thistle. I was diagnosed in 08/07. My second biopsy showed fibrosis. Did any of you have a delay in realizing how this can be serious? After almost a year my husband is starting to understand that the symptoms dont really go away. I make myself get up and do what I need to every day but the fatigue can be so bad that on many days, driving is not an option. My husband travels for work, so I am alone a lot during the week. He is looking for other work options so as to be here with me if I progress any more. I am praying for at least a leveling off of progression if not a reversal. There is no medication for Nash, only stuff to treat symptoms. Thanks for listening and for the info. Have a blessed day.

Cheryl
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