Hi All
I havent posted for a while. Hope everyone is ok. I am still on my journey searching for a diagnosis. I have said before that the last rheumy I saw ( few years ago) said my test results were inconclusive for lupus and diagnosed fibro. Initially I was investigated for MS. As my ESR was raised I was told that lupus was suspected due to the variety of my symptoms. That was the first time I had heard of the illness. Since then I have regularily visited this site and I,m very grateful to many of you for your support and encouragement each time I became discouraged in my search for a dx. Recently I have been in hospital due to inflammation in the GI tract. My liver function tests have been all over the place for about a year and I have had symptoms consistant with liver inflammation. The test I had was called an ERCP to look at the bile ducts. A previous MRI scan had shown an abnormality in a bile duct. My GP liased with the rheumy who referred me to a surgeon ( rheumy did not ask to see me) I have never been offered any results of my blood tests at my Gp,s surgery and am basically fobbed off when I try to get any information. Anyhow( sorry...long rant) the upshot of the tests by the surgeon is that I have an inflamed and swollen bile duct near my pancreas. Thanks to people on the forum I was able to understand that lupus can affect the bile ducts( despite my GP insisting that it did not). I dont drink alcohol so the surgeon accepts that there must be another reason for the problem. I do not have gallstones. i have previously had various areas inflamed in the GI tract so the surgeon wants more blood tests done this week but hasnt told me what he,s testing for. I had pancreatitis following the tests due to the invasive procedure. I,m still unwell and my other symptoms have flared up with it. Pain in joints now excrutiating, dry itchy eyes, swelling in hands and knees, mouth and nose ulcers etc. My daughter( aged 38) has been having lots of lupus type symptoms too and today she saw a rheumy for the first time. Guess what...... she got a dx of lupus !!! I,m so glad she was able to get a dx. Not glad that she has lupus but if you have it then better to know. She has been prescribed plaquenil. I guess there is hope for me yet because the rheumy she saw is in the hospital I am attending.
I,ve sent her the link for the forum so hope she can share her story and perhaps give others hope. In the meantime I,ll just keep going. Thank you all for being here. I,d have gone mad many times without this site.
Love
Mary
I havent posted for a while. Hope everyone is ok. I am still on my journey searching for a diagnosis. I have said before that the last rheumy I saw ( few years ago) said my test results were inconclusive for lupus and diagnosed fibro. Initially I was investigated for MS. As my ESR was raised I was told that lupus was suspected due to the variety of my symptoms. That was the first time I had heard of the illness. Since then I have regularily visited this site and I,m very grateful to many of you for your support and encouragement each time I became discouraged in my search for a dx. Recently I have been in hospital due to inflammation in the GI tract. My liver function tests have been all over the place for about a year and I have had symptoms consistant with liver inflammation. The test I had was called an ERCP to look at the bile ducts. A previous MRI scan had shown an abnormality in a bile duct. My GP liased with the rheumy who referred me to a surgeon ( rheumy did not ask to see me) I have never been offered any results of my blood tests at my Gp,s surgery and am basically fobbed off when I try to get any information. Anyhow( sorry...long rant) the upshot of the tests by the surgeon is that I have an inflamed and swollen bile duct near my pancreas. Thanks to people on the forum I was able to understand that lupus can affect the bile ducts( despite my GP insisting that it did not). I dont drink alcohol so the surgeon accepts that there must be another reason for the problem. I do not have gallstones. i have previously had various areas inflamed in the GI tract so the surgeon wants more blood tests done this week but hasnt told me what he,s testing for. I had pancreatitis following the tests due to the invasive procedure. I,m still unwell and my other symptoms have flared up with it. Pain in joints now excrutiating, dry itchy eyes, swelling in hands and knees, mouth and nose ulcers etc. My daughter( aged 38) has been having lots of lupus type symptoms too and today she saw a rheumy for the first time. Guess what...... she got a dx of lupus !!! I,m so glad she was able to get a dx. Not glad that she has lupus but if you have it then better to know. She has been prescribed plaquenil. I guess there is hope for me yet because the rheumy she saw is in the hospital I am attending.
I,ve sent her the link for the forum so hope she can share her story and perhaps give others hope. In the meantime I,ll just keep going. Thank you all for being here. I,d have gone mad many times without this site.
Love
Mary
