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  • another case of difficult diagnosis

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    Old 05-27-2017, 05:12 PM   #16
    jessyBR
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    Re: another case of difficult diagnosis

    So... Im back some months later lol. Updating: I did the skin biopsy and it says "spongiotic perivascular dermatitis (mixed type). '-' i did some research about it and it seems it can be a lot of things .-.
    I looked for a well recommended rheumatologist. She asked some blood and urine tests and and a chest x ray. The only thing that came back positive was the ANA (!!!) it says 1/160 nuclear quasi-homogeneous pattern (??). She said it means nothing because the anti sm was negative (it had already came back positive In the past but i didnt mention it to her idk why :/) She told me what i had is indeed fibromyalgia and prescribed me Lyrica. I am dissappointed because i have already tried a lot of fibromyalgia treatments without sucess. And in the meanwhile, since my last post, a lot of other symptoms appeared What do you think I should do?

    Last edited by jessyBR; 05-27-2017 at 05:13 PM.

     
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    Old 05-28-2017, 03:24 AM   #17
    VeeJ
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    Re: another case of difficult diagnosis

    jessyBR, in no special order, I'd ask more questions, and I'd seriously consider trying the Lyrica.

    Timing of your positive ANA. I'm not sure how much it really "counts" that your blood draw that had positive ANA was negative for Sm. I think some AB's spike highest in advance of a disease flare while others lag some. In other words, all AB's don't necessarily mirror one another! My doctors counted anything that had EVER been positive as permanently positive.

    What kind of skin biopsy you had. You could ask the derm to confirm, and even ask for a copy of the results for your files. The best skin test for lupus, the Lupus Band Test (LBT), is highly specialized and has 2 parts. First part is the usual look at skin sample under the microscope. The second part is special: application of 5 specific immunofluoresecent stains, to see if linear "bands" (lines) appear. The more lines, the greater the odds that you have SLE. When all 5 stains create these distinctive bands, the odds that you have lupus are greater than 99%, which is interpreted as YES. Why I suggest asking more: my derms at first only ordered a run-of-the-mill biopsy, the kind that lacks part 2, and those results were not helpful. My 8th derm was the one who decided to do a full-blown LBT and basically said my earlier biopsies had been a waste of time and money.

    You could ask your doctors about the conditions featuring your HIGHEST antibodies, also ask them to confirm whether you've been fully assessed for those conditions. Are the ones you've tested the most above-range SSA and SSB (anti-Ro and anti-La)? These AB's can be positive in lupus and in Sjogren's syndrome---maybe some more things too, I'm not sure...

    Taking Lyrica probably can't hurt, assuming you have no major side effects. If you DO have an autoimmune, the Lyrica shouldn't affect it one way or another, is my best guess. (I hope others comment on this.)

    Finally, you mentioned new symptoms. What are those (if you care to share)? Thinking of you & really sorry you're still in limbo. We understand limbo here, unfortunately, given how lupus and its "close cousins" can be so very hard to diagnose. Bye for now, Vee

     
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    Old 05-28-2017, 11:34 AM   #18
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    Re: another case of difficult diagnosis

    Smith antibody is only positive in about 30% of lupus patients, and that can be intermittently positive. The fact you had a positive Smith in past IS significant, as that is one of the few specific tests for lupus, along with dsDNA. You need to tell your rheum about previous test, and hopefully get a copy of the lab result from then. You need not have a + Smith result, and an ANA of 1:160 is considered clinically significant. If your current rheum disregards your past + Smith antibody, I would find a different rheum. I would try hard also to get a copy of that antibody result for documentation. Good luck with your diagnostic process.

     
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    Old 05-28-2017, 04:59 PM   #19
    jessyBR
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    Re: another case of difficult diagnosis

    Quote:
    Originally Posted by VeeJ View Post
    jessyBR, in no special order, I'd ask more questions, and I'd seriously consider trying the Lyrica.

    Timing of your positive ANA. I'm not sure how much it really "counts" that your blood draw that had positive ANA was negative for Sm. I think some AB's spike highest in advance of a disease flare while others lag some. In other words, all AB's don't necessarily mirror one another! My doctors counted anything that had EVER been positive as permanently positive.

    What kind of skin biopsy you had. You could ask the derm to confirm, and even ask for a copy of the results for your files. The best skin test for lupus, the Lupus Band Test (LBT), is highly specialized and has 2 parts. First part is the usual look at skin sample under the microscope. The second part is special: application of 5 specific immunofluoresecent stains, to see if linear "bands" (lines) appear. The more lines, the greater the odds that you have SLE. When all 5 stains create these distinctive bands, the odds that you have lupus are greater than 99%, which is interpreted as YES. Why I suggest asking more: my derms at first only ordered a run-of-the-mill biopsy, the kind that lacks part 2, and those results were not helpful. My 8th derm was the one who decided to do a full-blown LBT and basically said my earlier biopsies had been a waste of time and money.

    You could ask your doctors about the conditions featuring your HIGHEST antibodies, also ask them to confirm whether you've been fully assessed for those conditions. Are the ones you've tested the most above-range SSA and SSB (anti-Ro and anti-La)? These AB's can be positive in lupus and in Sjogren's syndrome---maybe some more things too, I'm not sure...

    Taking Lyrica probably can't hurt, assuming you have no major side effects. If you DO have an autoimmune, the Lyrica shouldn't affect it one way or another, is my best guess. (I hope others comment on this.)

    Finally, you mentioned new symptoms. What are those (if you care to share)? Thinking of you & really sorry you're still in limbo. We understand limbo here, unfortunately, given how lupus and its "close cousins" can be so very hard to diagnose. Bye for now, Vee
    Hi, Veej! Thank you SO much for your response. *-*

    Yes, i started taking the Lyrica. Im really hoping it works .-.

    About the skin biopsy. I am with a copy of the results. it has 2 pages.
    The first one says "Anatomopathological test", and the diagnosis is the dermatitis one.
    The second page is the "Direct immunofluorescence test". They tested for: IgA, IgG, IgM and C3. And all of them says "negative reaction". Is that the same you did?

    I did the anti-Ro and anti-la this time too. All negative.
    In the past the anti-Ro and anti-rnp were the highest ones.

    The new symptoms are:
    Light sensitive eyes, a white stain in the vision of the righ eye '-', my hands turns blue sometimes, hair loss, night sweats, little red dots on the skin (?!), fever, mouth and nose sores.

     
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    Old 05-28-2017, 05:06 PM   #20
    jessyBR
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    Re: another case of difficult diagnosis

    Quote:
    Originally Posted by ladybud View Post
    Smith antibody is only positive in about 30% of lupus patients, and that can be intermittently positive. The fact you had a positive Smith in past IS significant, as that is one of the few specific tests for lupus, along with dsDNA. You need to tell your rheum about previous test, and hopefully get a copy of the lab result from then. You need not have a + Smith result, and an ANA of 1:160 is considered clinically significant. If your current rheum disregards your past + Smith antibody, I would find a different rheum. I would try hard also to get a copy of that antibody result for documentation. Good luck with your diagnostic process.
    Hi! thank you for the information. Yes, it looks like I will have to find a new rheum AGAIN! This one is expensive and I dont think she will help anymore >.< Thank you!

     
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