Re: Help please

[Guest guest]

Welcome to the group, Tracey.

We've all been there with the difficulty getting a diagnosis. For some reason autoimmune disease seeems to be very hard to diagnose, but mostly it's because they have so much to rule out first. Also, autoimmune diseases always travel in packs so it's likely that you have more than one thing going on.

We have several members with liver ailments of several different types, so you should be getting some more replies as the day goes on.

I just go with my gut and with the Docs reputation as far as the trust issue, but I've been through several Docs and my primary is still making referrals to find out the extent of what's going on with me.

I'm Kathy and my story is on the groups website. Right now is a rough time of year because of the changable weather and the fact that I also have allergies and asthma acting up right now.

It took me several years to get to the diagnostic point where I am now. Meds continually need changed, and nothing really seems to help at this point.

The Doc that said the depression was a manifestation of the autoimmune disorder is accurate. It's part of the illness, but of course you still need the medication for it.

Pam??? Sounds like your area of expertise.

Where do you live, Tracey?

Kathy

Help please

Hi everyone, I need some help please! My story is a pretty long one, so sorry if it becomes a bit tedious. In November last year I was hospitalized for depression and have a history of suffering from post traumatic stress disorder (that is another story for another time). Anyway during my hopitalisation my Psychiatrist did the routine checks and found that my ESR was quite raised so she started doing more tests to try and find out what the problem was. For some reason, I'm not sure what, she thought I might have an autoimmune problem so did the bloods for those. I can't remember now what all the results were but I know I tested positive for ANA, anti-smooth muscle antibodies and rheumatoid factors. In addition to this the liver functions tests showed exceptionally high AST and ALT results. She duly sent me off to see a physician who did a liver biopsy in early January. He then phoned me to tell me that I had SLE and faxed through a script for Pulmison. I was very unimpressed with the way he handled the whole situation so asked for a referral to another physician. The new physician confirmed that I have some autoimmune disorder but said he couldn't quite say what – he incidentally said that I probably wasn't depressed at the outset and this was probably a manifestation of the autoimmune disorder. He said that the results from the liver biopsy said that I have autoimmune hepatitis and not SLE but he wasn't convinced about this so sent me to see a Professor of Heptology. The Prof referred to me as a very interesting case – not exactly comforting, but he is a very nice man. He then consulted with a Prof in pathology and they investigated the liver biopsy more thoroughly. Now in the Prof's own words he said I'm displaying all the symptoms of autoimmune hepatitis but the hepatitis could be drug induced through the use of an anti-depressant. He said that I had to come of all medication i.e. anti-depressants and Pulmison to make a proper diagnosis. This was duly done in the beginning of Feb and I started on a different anti-depressant that isn't metabolized by the liver. By mid-Feb I was feeling absolutely awful and went back to the physician who put me back onto the Pulmison. I started me on 40mg a day for two weeks and then slowly started to taper off over a eight week period. I was feeling much better on the Pulmison but still not 100%. During this time my bloods starting showing that the ALT and AST were coming down, though very slowly. I am having bloods taken every week. The Prof then declared that since the results of the ALT and AST were coming down it had to be as a result of coming off the anti-depressant and declared that I have a drug induced hepatitis. In the meantime I had asked for a referral to a Rheumatologist to find out why the ANA and anti-smooth muscle antibodies are so high. I saw him two weeks ago and he says that he isn't convinced that I have a drug induced hepatitis because the ALT and AST have still not returned to normal, even though they are coming down, and the decrease could be as a result of the ongoing use of Pulmison and not in fact as a result of the removal of the anti-depressant. He has now started taking me off the Pulmison. I was on 15mg when I went to see him and have been tapering off and took my last dose this morning. I go back to see the Rheumatologist at the end of May. In the meantime I am feeling worse than I did when all of this started. To say that I am chronically exhausted is an understatement! I am also now feeling nauseas and am having strange pains in the area of my liver – not consistent pain, just now and then I get a sharp reminder that my liver is there. I'm beginning to wonder if all these symptoms aren't just in my head.Please can somebody help me! Is it usual for there to be such a discrepancy in diagnosis from different doctors? I've now seen four different doctors and not one of them has had the same view as the others. This has now all been going on for over six months and I feel that I am no further than I was when I had the initial bloods taken. Has it taken you all a long time to get a proper diagnosis?I would really appreciate any help and guidance in this. Oh, one last question – how do you know which doctor to trust?Thanks for your time. Tracey Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

Tracey - Sorry to say it sometimes takes years to get a diagnosis and yes,

doctors do disagree often. Sounds like you need to get all your docs on the

same page, maybe have one doc overseeing all the others and make sure

they're talking to each other. The Pulmison is steroids, isn't it? Check out

the ACES web site http://aces_autoimmune.tripod.com/ and click on

Understanding your lab results, if you don't understand how to read them.

Have you been getting copies of all your lab results and your files at the

various doctors? I'm sure some of our other members can better answer your

questions about the liver than I can, like Pam & Christy. Hang in there!

Hugs,

It's just my imagination, running away with me...

[Guest guest]

Tracey, first of all welcome to our list.

I'm sure you've already had several answers. please go to our website (thank you for your work on it!) and read about others trying to get their diagnosis. Most of us have had difficulty pinning these diseases down because we have so many symptoms that cross over from one disease to another and we usually find that we have more than one when it's all sorted out. Our web site is at http://ACES_Autoimmune.tripod.com

Where are you from?

Christy

List Mama

Help please

Hi everyone, I need some help please! My story is a pretty long one, so sorry if it becomes a bit tedious. In November last year I was hospitalized for depression and have a history of suffering from post traumatic stress disorder (that is another story for another time). Anyway during my hopitalisation my Psychiatrist did the routine checks and found that my ESR was quite raised so she started doing more tests to try and find out what the problem was. For some reason, I'm not sure what, she thought I might have an autoimmune problem so did the bloods for those. I can't remember now what all the results were but I know I tested positive for ANA, anti-smooth muscle antibodies and rheumatoid factors. In addition to this the liver functions tests showed exceptionally high AST and ALT results. She duly sent me off to see a physician who did a liver biopsy in early January. He then phoned me to tell me that I had SLE and faxed through a script for Pulmison. I was very unimpressed with the way he handled the whole situation so asked for a referral to another physician. The new physician confirmed that I have some autoimmune disorder but said he couldn't quite say what – he incidentally said that I probably wasn't depressed at the outset and this was probably a manifestation of the autoimmune disorder. He said that the results from the liver biopsy said that I have autoimmune hepatitis and not SLE but he wasn't convinced about this so sent me to see a Professor of Heptology. The Prof referred to me as a very interesting case – not exactly comforting, but he is a very nice man. He then consulted with a Prof in pathology and they investigated the liver biopsy more thoroughly. Now in the Prof's own words he said I'm displaying all the symptoms of autoimmune hepatitis but the hepatitis could be drug induced through the use of an anti-depressant. He said that I had to come of all medication i.e. anti-depressants and Pulmison to make a proper diagnosis. This was duly done in the beginning of Feb and I started on a different anti-depressant that isn't metabolized by the liver. By mid-Feb I was feeling absolutely awful and went back to the physician who put me back onto the Pulmison. I started me on 40mg a day for two weeks and then slowly started to taper off over a eight week period. I was feeling much better on the Pulmison but still not 100%. During this time my bloods starting showing that the ALT and AST were coming down, though very slowly. I am having bloods taken every week. The Prof then declared that since the results of the ALT and AST were coming down it had to be as a result of coming off the anti-depressant and declared that I have a drug induced hepatitis. In the meantime I had asked for a referral to a Rheumatologist to find out why the ANA and anti-smooth muscle antibodies are so high. I saw him two weeks ago and he says that he isn't convinced that I have a drug induced hepatitis because the ALT and AST have still not returned to normal, even though they are coming down, and the decrease could be as a result of the ongoing use of Pulmison and not in fact as a result of the removal of the anti-depressant. He has now started taking me off the Pulmison. I was on 15mg when I went to see him and have been tapering off and took my last dose this morning. I go back to see the Rheumatologist at the end of May. In the meantime I am feeling worse than I did when all of this started. To say that I am chronically exhausted is an understatement! I am also now feeling nauseas and am having strange pains in the area of my liver – not consistent pain, just now and then I get a sharp reminder that my liver is there. I'm beginning to wonder if all these symptoms aren't just in my head.Please can somebody help me! Is it usual for there to be such a discrepancy in diagnosis from different doctors? I've now seen four different doctors and not one of them has had the same view as the others. This has now all been going on for over six months and I feel that I am no further than I was when I had the initial bloods taken. Has it taken you all a long time to get a proper diagnosis?I would really appreciate any help and guidance in this. Oh, one last question – how do you know which doctor to trust?Thanks for your time. Tracey Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

One other thing I thought of: when I go to a doctor, I try to sit by older women and get them talking. They'll tell you exactly what they think of that doctor and what type of care they've received. Also, if there are support groups at a local hospital, ask them if they have recommendations for doctors..

[Guest guest]

The problem with that is --as I found out from years of old women patients--some of them will always bitch about a Doc no matter how good he is. If they aren't getting better, no matter that the illness they have isn't going to go away, they don't like the Doc. If they think he's too friendly or not friendly enough ( and often I would have too different patients where one said too friendly and one said not enough), or they don't like the way he dresses ("he wears sneakers to the office!"), or they are in a pissy mood 'cause their children haven't called, or one of their pills made them nauseated or they had some other reaction that they didn't bother to call the Doc with, if his nurse pumps the blood pressure cuff too tight, etc. LOL You wouldn't believe some of the "complaints" I've heard over the years.

Kathy

Re: Help please

One other thing I thought of: when I go to a doctor, I try to sit by older women and get them talking. They'll tell you exactly what they think of that doctor and what type of care they've received. Also, if there are support groups at a local hospital, ask them if they have recommendations for doctors..

Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

LOL You have a point there LOL Usually when I do that, they talk about how they feel and I try not to get them "too old" or crabby looking LOLOL How's that for profiling?

Re: Help please

One other thing I thought of: when I go to a doctor, I try to sit by older women and get them talking. They'll tell you exactly what they think of that doctor and what type of care they've received. Also, if there are support groups at a local hospital, ask them if they have recommendations for doctors..

Please visit our website at:http://ACES_Autoimmune.tripod.com Please visit our website at:http://ACES_Autoimmune.tripod.com

[Guest guest]

,

I am catching up on e-mails, so I haven't read other people's responses to your e-mail. But I'm sure that your story is a very common one in this group.

I don't think you will ever hear a "correct" diagnosis of your condition (whatever it is if it is autoimmune)

My suggestion to you is to learn to "know" your own body. Listen to the experts but remember that YOU are the only expert on your body. Take in what the experts say and then assess how that feels to YOU and your body. Read heaps on the subject and LEARN to be your own expert. Don't "toss out the baby with the bathwater" by totally ignoring professional help but realise that medical opinion is only that - their "opinion" not "fact". No one knows for sure anything in the autoimmune area.

Hang in there. Join this group and listen to the "experts" in this group as well - at least they have really experienced "autoimmune illnesses".

(((Hugs)))

Robyn

survivor81169 wrote:

Hi everyone, I need some help please! My story is a pretty long one, so sorry if it becomes a bit tedious. In November last year I was hospitalized for depression and have a history of suffering from post traumatic stress disorder (that is another story for another time). Anyway during my hopitalisation my Psychiatrist did the routine checks and found that my ESR was quite raised so she started doing more tests to try and find out what the problem was. For some reason, I'm not sure what, she thought I might have an autoimmune problem so did the bloods for those. I can't remember now what all the results were but I know I tested positive for ANA, anti-smooth muscle antibodies and rheumatoid factors. In addition to this the liver functions tests showed exceptionally high AST and ALT results.

She duly sent me off to see a physician who did a liver biopsy in early January. He then phoned me to tell me that I had SLE and faxed through a script for Pulmison. I was very unimpressed with the way he handled the whole situation so asked for a referral to another physician. The new physician confirmed that I have some autoimmune disorder but said he couldn't quite say what – he incidentally said that I probably wasn't depressed at the outset and this was probably a manifestation of the autoimmune disorder. He said that the results from the liver biopsy said that I have autoimmune hepatitis and not SLE but he wasn't convinced about this so sent me to see a Professor of Heptology. The Prof referred to me as a very interesting case – not exactly comforting, but he is a very nice man. He then consulted with a Prof in pathology and they investigated the liver biopsy more

thoroughly. Now in the Prof's own words he said I'm displaying all the symptoms of autoimmune hepatitis but the hepatitis could be drug induced through the use of an anti-depressant. He said that I had to come of all medication i.e. anti-depressants and Pulmison to make a proper diagnosis. This was duly done in the beginning of Feb and I started on a different anti-depressant that isn't metabolized by the liver. By mid-Feb I was feeling absolutely awful and went back to the physician who put me back onto the Pulmison. I started me on 40mg a day for two weeks and then slowly started to taper off over a eight week period. I was feeling much better on the Pulmison but still not 100%. During this time my bloods starting showing that the ALT and AST were coming down, though very slowly. I am having bloods taken every week. The Prof then declared that since the

results of the ALT and AST were coming down it had to be as a result of coming off the anti-depressant and declared that I have a drug induced hepatitis. In the meantime I had asked for a referral to a Rheumatologist to find out why the ANA and anti-smooth muscle antibodies are so high. I saw him two weeks ago and he says that he isn't convinced that I have a drug induced hepatitis because the ALT and AST have still not returned to normal, even though they are coming down, and the decrease could be as a result of the ongoing use of Pulmison and not in fact as a result of the removal of the anti-depressant. He has now started taking me off the Pulmison. I was on 15mg when I went to see him and have been tapering off and took my last dose this morning. I go back to see the Rheumatologist at the end of May. In the meantime I am feeling worse than I did when all of this started. To say

that I am chronically exhausted is an understatement! I am also now feeling nauseas and am having strange pains in the area of my liver – not consistent pain, just now and then I get a sharp reminder that my liver is there. I'm beginning to wonder if all these symptoms aren't just in my head.Please can somebody help me! Is it usual for there to be such a discrepancy in diagnosis from different doctors? I've now seen four different doctors and not one of them has had the same view as the others. This has now all been going on for over six months and I feel that I am no further than I was when I had the initial bloods taken. Has it taken you all a long time to get a proper diagnosis?I would really appreciate any help and guidance in this. Oh, one last question – how do you know which doctor to trust?Thanks for your time. Tracey

Please visit our website at:http://ACES_Autoimmune.tripod.com

Find local movie times and trailers on Yahoo! Movies.

[Guest guest]

Hi Tracey.....Welcome to our family......When dealing with the liver there are so many things that can cause one problem or a bunch of problems.....Did your doctor test you for Hemochromatosis or NASH?.....These are both problems that affect the liver....I have both of them.....They cause so many other problems in the body, including shutting down organs....The biopsy should show if you have NASH, or Fatty Liver Disease.....Certain tests need to be done to see if you have Hemochromatosis.....Both these diseases are still not recognized by many doctors.....Be sure to talk to your doctor about them....Pam L., 2nd List Mama

Help please

Hi everyone, I need some help please! My story is a pretty long one, so sorry if it becomes a bit tedious. In November last year I was hospitalized for depression and have a history of suffering from post traumatic stress disorder (that is another story for another time). Anyway during my hopitalisation my Psychiatrist did the routine checks and found that my ESR was quite raised so she started doing more tests to try and find out what the problem was. For some reason, I'm not sure what, she thought I might have an autoimmune problem so did the bloods for those. I can't remember now what all the results were but I know I tested positive for ANA, anti-smooth muscle antibodies and rheumatoid factors. In addition to this the liver functions tests showed exceptionally high AST and ALT results. She duly sent me off to see a physician who did a liver biopsy in early January. He then phoned me to tell me that I had SLE and faxed through a script for Pulmison. I was very unimpressed with the way he handled the whole situation so asked for a referral to another physician. The new physician confirmed that I have some autoimmune disorder but said he couldn't quite say what – he incidentally said that I probably wasn't depressed at the outset and this was probably a manifestation of the autoimmune disorder. He said that the results from the liver biopsy said that I have autoimmune hepatitis and not SLE but he wasn't convinced about this so sent me to see a Professor of Heptology. The Prof referred to me as a very interesting case – not exactly comforting, but he is a very nice man. He then consulted with a Prof in pathology and they investigated the liver biopsy more thoroughly. Now in the Prof's own words he said I'm displaying all the symptoms of autoimmune hepatitis but the hepatitis could be drug induced through the use of an anti-depressant. He said that I had to come of all medication i.e. anti-depressants and Pulmison to make a proper diagnosis. This was duly done in the beginning of Feb and I started on a different anti-depressant that isn't metabolized by the liver. By mid-Feb I was feeling absolutely awful and went back to the physician who put me back onto the Pulmison. I started me on 40mg a day for two weeks and then slowly started to taper off over a eight week period. I was feeling much better on the Pulmison but still not 100%. During this time my bloods starting showing that the ALT and AST were coming down, though very slowly. I am having bloods taken every week. The Prof then declared that since the results of the ALT and AST were coming down it had to be as a result of coming off the anti-depressant and declared that I have a drug induced hepatitis. In the meantime I had asked for a referral to a Rheumatologist to find out why the ANA and anti-smooth muscle antibodies are so high. I saw him two weeks ago and he says that he isn't convinced that I have a drug induced hepatitis because the ALT and AST have still not returned to normal, even though they are coming down, and the decrease could be as a result of the ongoing use of Pulmison and not in fact as a result of the removal of the anti-depressant. He has now started taking me off the Pulmison. I was on 15mg when I went to see him and have been tapering off and took my last dose this morning. I go back to see the Rheumatologist at the end of May. In the meantime I am feeling worse than I did when all of this started. To say that I am chronically exhausted is an understatement! I am also now feeling nauseas and am having strange pains in the area of my liver – not consistent pain, just now and then I get a sharp reminder that my liver is there. I'm beginning to wonder if all these symptoms aren't just in my head.Please can somebody help me! Is it usual for there to be such a discrepancy in diagnosis from different doctors? I've now seen four different doctors and not one of them has had the same view as the others. This has now all been going on for over six months and I feel that I am no further than I was when I had the initial bloods taken. Has it taken you all a long time to get a proper diagnosis?I would really appreciate any help and guidance in this. Oh, one last question – how do you know which doctor to trust?Thanks for your time. Tracey Please visit our website at:http://ACES_Autoimmune.tripod.com