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Primary Biliary Cirrhosis


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#1 relicmom1

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Posted 18 July 2008 - 04:57 AM

Hello All! I have been "missing" for a while :rolleyes: . I thought things were going ok until I got a letter from a Doctor at the University of Texas.... I participated in their Scleroderma Registry and DNA Repository. The letter I got says I tested positive for the "anti-mitochondrial antibody" and that this test "raises the possibility" that I may have a condition called primary biliary cirrhosis.... That I need to see my dr and follow-up. I saw my Primary dr and he has ordered a ultrasound of my liver and wants me to see my gastro dr. I may have to have a liver biopsy to confirm whether or not I actually have this. My question is does anyone have this or been tested for this and what course can I expect. I have my ultrasound scheduled for July 21st but I couldn't get in to see the gastro doctor until the end of August! At first they said the first appointment was the END OF DECEMBER!!!!!! I pitched a polite fit and they "worked me in" for the August appointment. I don't need to tell you guys just how scared I am.........Anyone have any words of wisdom????? :huh:
Peace :)
Barbara aka relicmom1

#2 jefa

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Posted 18 July 2008 - 05:37 AM

Hi, Barbara. Hey, that's unfortunate, but isn't it good that you they happened to catch this through the registry? I liked your expression, "pitched a polite fit" and may use it myself.

I don't have any personal experience with this, but we do have a section on Primary Biliary Cirrhosis (PBC) on our Liver and Spleen Involvement page which may be useful to read while you are waiting for your appointment in August. Keep us posted, please.
Warm wishes,
Jefa

Carrie Maddoux
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#3 relicmom1

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Posted 18 July 2008 - 05:49 AM

Jefa,

It helps that I worked in a medical office for over 25 years (primary care mostly) and I know how to "play their game" :rolleyes: They say those of us who work/worked in the medical field can make the worst patients....we know just enough medical info to be dangerous :lol: . This will be the longest month of my life ..... waiting to see the gastro doctor....good thing I can be a patient person.....Thanks for the link, it has helped alot.
Peace :)
Barbara aka relicmom1

#4 Nina

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Posted 18 July 2008 - 05:53 AM

My goodness Barbara, I'm so sorry to hear this. Although you are very fortunate to have had someone catch it ~ you know all too well that the eariler the better, if in fact it is what they think it is. that's one of my biggest fears, that they are overlooking things (which they have for five years).
Anyway, I'm afraid I have not heard of this condition and I'm sorry I can't offer some sound advice. I would say read some about it, but not if it is going to upset you. Remember they only suspect that you have this. Try to stay positive and think good thoughts. And please do keep in touch.
By the way, good doing with the appointment. They can always fit you in, you just have to handle it correctly. Which it appears you did!!
Kuddos to you!!!
Much love,
Nina

#5 nan

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Posted 18 July 2008 - 05:57 AM

Barbara,
I know that that condition can go along with Sjogren's. I didn't realize it could go with Scleroderma too. That's all I know about it. Don't you have watermelon stomach like me? I live in Richmond. Who is your GI doctor?
Take care,
Nan

#6 Peggy

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Posted 18 July 2008 - 06:53 AM

I'm sorry to hear you have an additional battle on your hands. It's great that you were able to find out though so you can begin to treat it or do whatever you have to to fight it. I have no idea if my doctor checks my liver numbers but I will ask now for in the future after reading about it. It sounds like something all of us may develop because of this disease and the meds we take. I wish you all the best.

Warm hugs,

Peggy

#7 smac0719

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Posted 18 July 2008 - 09:57 AM

Relic,

I don't have any knowledge of this condition either, but like the others have mentioned, arming yourself with as much knowledge about it should help. My wish is that what is "suspected" does not become confirmed. One of the questions I have learned to ask a new doctor is about their ability to schedule me for an appointment if I encounter a need to be seen quickly. That is so important. I think if you have the place where you're having the test send a copy of the results to your gastro that he/she will schedule you sooner if necessary. That's my wish for all it's worth.
I may have Scleroderma, but Scleroderma doesn't have me!

#8 relicmom1

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Posted 19 July 2008 - 04:00 AM

THANKS everyone for the great support !! (as always!!) The "fly in the ointment" , if you will, is that I have had high liver chemicals for years on my blood chemistry panels, but they always said "we'll just watch them" Mind you , they weren't sky high, but they were abnormal none the less. Since they remained "stable", but still high, they felt there was no need to investigate because I am over-weight and they automatically attributed it to a "fatty" liver!! I have been battling in this war we call scleroderma for over 10 years now and I am used to the unexpected "hiccups" along the way. I have the CREST form of sclero and from what I have been able to research, this is amost a common thing in CREST.



Nan...I do have watermelon stomach and my gastro doctor is Gelrud. I see him at his St Mary's office. I knew I was going to have a bit of a problem getting an acceptable appointment and warned my primary care physician he may have to run interference for me. He said as long as I could get one within a month, that would be ok. In Gelrud's office if you need to be seen sooner than what the receptionist has open on the book, you talk to his secretary to get in soon (which is what I did , and at first she wanted to give me OCTOBER and I said that was unacceptable!!) My primary care physician is ABSOLUTELY WONDERFUL!!! He knows enough about sclero to know he doesn't have a clue! :P His son has some type of weird medical problem and he has to jump thru the same hoops as us to get someone that knows about his son's disease. He takes his son to BOSTON!!!! At least I found a great specialist in Baltimore. I just went to her a few days before I got my "wonderful" letter from Texas. I emailed her and she said that since there was only one high marker, not to be overly concerned, but concerned and to make sure I follow-up with the proper testing and to keep her informed. She suggested a couple of other blood tests she thinks I should get as well. She is also a research scientist in sclero at Johns Hopkins, so I felt better after I heard from her.

I am sorry this ended up so long everybody, but you guys are the only ones who understand what it's like with this disease. My family is scared enough about what I have, they just shut down when another hurdle is thrown my way............
Peace :)
Barbara aka relicmom1

#9 nan

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Posted 19 July 2008 - 09:13 AM

Barbara,
That's great you got into Hopkins. I go there too. Who do you see? I go to Good Samaritan and see Dr. Saleh in the Rheumatology department. They wouldn't take me at the scleroderma dept because I didn't have a diagnosis of scleroderma yet and my rheumatologist here wouldn't commit to anything in his letter. Anyway, I love Dr. Saleh. She diagnosed me with CREST, Sjogren's , and Fibromyalgia. I see her every six months . On my next visit I am also going to see a GI doctor up there.
Take care,
Nan

#10 Snowbird

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Posted 19 July 2008 - 10:05 AM

Hi Relicmom1

Sorry to hear your news...but I don't know anything about it either that can help. Glad to hear you made your way in early for the appointment though, good for you! Keep us posted on how things go ok. Like the others said, try not to fret too much now...perhaps it is explainable without a huge hurdle, I'll keep my fingers crossed for you!
Sending good wishes your way!

#11 relicmom1

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Posted 27 July 2008 - 05:05 PM

Nan,

I'm sorry I took so long to get back to you ( and the rest of you guys ) . I see Dr. Laura Hummers at Johns Hopkins. I went thru two rheums here ( and 4 years!) before I got the correct diagnosis. My first diagnosis was rheumatoid arthritis (despite negative rheumatoid factor blood test), then it was no you have lupus, then and you have raynauds to finally CREST (when I got fed up and went to another rheumatologist). After a few years , it seemed as if he just didn't care about the day to day problems we deal with. I like the fact that I can email Dr. Hummers and she will usually get back to me with in a day!

I had my ultasound last Monday and the only thing I could get out of the nurse when she called was that I needed to make sure I keep my appointment with the gastro dr...... :(
Peace :)
Barbara aka relicmom1