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Old 08-09-2012, 10:53 AM   #1
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jazydust HB User
Angry Is anyone else getting the run around? instead of a diagnosis???

I am at a loss....I have been diagnosed with Inflammation in my Bile Duct. Primary biliary cirrhosis, being monitored and MRI's every few months for possible diagnosis of Primary sclerosing cholangitis.
Here is my story: I have been in constant pain for about 1 year now, pain in upper right side. Which seems to be getting worse.
I have Nausea, diarrhea frequent. Fever at times, nothing consistent. It all started with my gallbladder which is enlarged, filled with polyps but NO gallstones. My inflammed bile duct has damaged segment 8 of my Liver, which is inflammed. Urine is sometimes bright yellow, yesterday was dark brown but clear. I was told that is a build up of bile. I see a GI specialist, because of a Rectal bleed, 8 months ago. Which I am told could be part of the disease. Being sent for an Ednoscope in future, another MRI in 6 - 9 months.
I had a negative tumour marker test (due to blocked bile duct).

It seems I am in limbo....waiting for more tests, no one has mentioned the idea of medication. Anyway to stop the pain, inflammation except putting an ice pack on my side.

I had asked the Liver Dr's nurse to make another appt, since I am getting worse. She said there is "no need to see him until after the MRI" in 9 months time. I wanted to ask if they can do an ERCP to unblock the bile duct. Now I don't know what to do.....am I just suposse to get worse everyday, in more pain for another year, or longer....or wait until my Liver fails before anyone will do anything?????

 
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Old 08-09-2012, 11:22 AM   #2
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Saundrella HB User
Re: Is anyone else getting the run around? instead of a diagnosis???

Quote:
Originally Posted by jazydust View Post
I am at a loss....I have been diagnosed with Inflammation in my Bile Duct. Primary biliary cirrhosis, being monitored and MRI's every few months for possible diagnosis of Primary sclerosing cholangitis.
Here is my story: I have been in constant pain for about 1 year now, pain in upper right side. Which seems to be getting worse.
I have Nausea, diarrhea frequent. Fever at times, nothing consistent. It all started with my gallbladder which is enlarged, filled with polyps but NO gallstones. My inflammed bile duct has damaged segment 8 of my Liver, which is inflammed. Urine is sometimes bright yellow, yesterday was dark brown but clear. I was told that is a build up of bile. I see a GI specialist, because of a Rectal bleed, 8 months ago. Which I am told could be part of the disease. Being sent for an Ednoscope in future, another MRI in 6 - 9 months.
I had a negative tumour marker test (due to blocked bile duct).

It seems I am in limbo....waiting for more tests, no one has mentioned the idea of medication. Anyway to stop the pain, inflammation except putting an ice pack on my side.

I had asked the Liver Dr's nurse to make another appt, since I am getting worse. She said there is "no need to see him until after the MRI" in 9 months time. I wanted to ask if they can do an ERCP to unblock the bile duct. Now I don't know what to do.....am I just suposse to get worse everyday, in more pain for another year, or longer....or wait until my Liver fails before anyone will do anything?????
I hear you. I have PBC and I feel like they are waiting for the next shoe to drop instead of taking any action. The problem is the only action to take, ultimately, to save your life is a liver transplant. And those are not easy to come by. In my area, we need a MELD score of 30 to be eligible! I am never going to get sick enough, fast enough, to merit that! So, I go on doing the best I can. It's not easy. I feel for you but I guess we all must come to a point of accepting life is not perfect while continuing to do the best we can. That is what I am trying to do. Like I said, "It's not easy." I am not in pain, daily, though, like you are. So, God bless you and keep you and I hope you find some appropriate solutions to your pain, soon!

Saundrella

 
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