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  #1  
May 20th, 2007, 05:41 PM
Regular
Join Date: Mar 2007
Posts: 53
Hi, my name is Wesli.....I was diagnosed 2 years ago with psc or primary sclerosing cholangitis....this is a auto-immune disease that causes narrowing of your bile ducts inside and outside of your liver....it took a long time for the docs to finally agree on a condition for me.....they also said i have hemolytic anemia....i am 27 weeks pregnant and feel good for the time being....my anemia has been in remission for over a year now...and besides elevated liver enzymes on a blood test and having dark urine.....i really have no symptoms...the docs in va said i would need a transplant within the next year...that was a year ago.....we moved out to california about 11 months ago and i was evaluated at stanford for a liver transplant ...and it was determined that i didn't need one yet, so ....i am just waitin around until i do ....i guess..what i don't get is i don't fit the category for this disease at all.....75% are male...not me, 90% have uc ....i have been tested and i don't have that....and my only symptoms are the bloodwork and the dark urine and yellow skin when i was first diagnosed, but not anymore.........the docs said that for lack of a better diagnosis this is it........kind of hard to swallow ....just to sit and wait until you get worse.....anyway, just wanted to introduce myself....thank you for listening..
wesli
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  #2  
May 21st, 2007, 05:57 AM
Colee's Avatar Platinum Supermommy
Join Date: Apr 2005
Location: Northeastern Ohio
Posts: 16,731
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Hi Wesli
First I wanted to welcome you to the auto immune forum of JM!! I'm glad you found us here I'm Nichole,I have Ulcerative Colitis and Multiple Sclerosis. There is so much uncertainty when it comes to these AI diseases....I tend to beleive that we as patients almost know more about the disease itself then our doctors do. It sounds like you lived with that uncertainty for a long time,how unfair! I was a "lucky" one to be dx so quickly,with really both of my AI diseases. Although I have had symptoms of MS for years,once I was in that dx period,it was only the matter of weeks. I read up some on PSC...how scary things must be for you. Basically being told to wait until things get bad before anything will be done. That limbo is a tough one to swallow too,I'm sure

Anyhow,it's nice to see to meet you Post away...lots of support and understanding here.
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  #3  
May 21st, 2007, 08:43 AM
texasmomof2
Guest
Posts: n/a
Hi and welcome! I'm glad you found our part of JM! We are a small, but very supportive forum. I'm Janetta, and I have Lupus, Graves Disease and spondyloarthropathy (basically, arthritis of the back that can cause the spine to fuse together)

One thing about our forum, there is no such thing as TMI, so feel free to post anything about what you are feeling or experiening, because most likely someone else here has been experiencing it, too. And we are all here for each other.

Congrats on your pregnancy! I hope it continues to be trouble free for you.

Post often and let us know how you are doing! Look forward to getting to know you!
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  #4  
May 22nd, 2007, 09:46 PM
Regular
Join Date: Mar 2007
Posts: 53
thank you both so much for responding....it makes me feel really good to hear that i am not alone in this ! i was wondering if either of you have read the book, " lean on me", by nancy davis??? it is a really uplifting and informative book about her struggles with ms, but it really goes for all diseases....just thought i'd throw that out there...i just finished reading it and it was wonderful....hope you are both having a good day, and again thank you for making me feel so welcome here.
wesli
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  #5  
May 23rd, 2007, 03:59 AM
Mega Super Mommy
Join Date: May 2005
Location: VA
Posts: 4,035
Hi Wesli. Glad you made it over here. My name is Lorna and I have Graves Disease.

The women here are awesome I must say. You'll definitely feel welcome here, I know I do.

I've never heard of the book you mentioned, but I will check it out.
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  #6  
May 23rd, 2007, 06:43 AM
Colee's Avatar Platinum Supermommy
Join Date: Apr 2005
Location: Northeastern Ohio
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Quote:
thank you both so much for responding....it makes me feel really good to hear that i am not alone in this ! i was wondering if either of you have read the book, " lean on me", by nancy davis??? it is a really uplifting and informative book about her struggles with ms, but it really goes for all diseases....just thought i'd throw that out there...i just finished reading it and it was wonderful....hope you are both having a good day, and again thank you for making me feel so welcome here.
wesli[/b]
I'm always looking for something to read about AI diseases,especially MS. I have never heard about this book...but I am definetly going to check amazon and see about getting it to read. It sounds like a wonderful book!!

Hope your doing well today
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