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Discussion Starter #1
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
 

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Hi Mary,
I jusy wanted to say that i am really sorry for you, for all thats going on and for your daughters diagnosis too.

I really hope things get better for you soon and you can atleast get a confirmed diagnosis. What a silly gp springs to mind too!

Try not to worry yourself too much and get stresed as you know this can make things worse. Try to take care of yourself and rest as best you can.

Take Care

Cassie :)
 

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Hi Mary,

Sorry to hear about your daughter's diagnosis. At least she found out fairly quickly. Let her know it will take some time for the Plaquenil to start working. In my case it took 6 months.

Will you be seeing the same doctor? Or can you request the same doctor?

Take care,
Lazylegs
 

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Discussion Starter #5
Thanks for your replies friends. My daughter is trying to come to terms with her dx. She started the plaquenil yesterday and is fairly concerned about the possible side effects. She has two young, very lively boys and we are all hoping the medication will improve her health and make it easier to cope with a busy lifestyle. Thankfully we have this fab forum to educate and support those affected by this horrible illness. In our case lupus does seem to run in the family as my mother has it too. My own symptoms fit with lupus and although I have been dxd with fibro, I believe I am now more likely to be taken seriously regarding my other symptoms due to my current liver inflammation. At least I am " in the system". Had more bloods taken yesterday at the request of the surgeon who performed the bile duct exploration. I might then be referred to the rheumy who dxd my daughter. Lots of maybes but cant give up hope eh.
Thank you all for being here.

luv, Mary
 
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