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  • Mystery Illness (so far)

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    Old 10-11-2014, 01:51 PM   #1
    EarthElemental's Avatar
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    Location: Hollidaysburg, Pennsylvania
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    Mystery Illness (so far)

    Hi all,
    My friend and neighbor suggested I post here, in case anyone might recognise these symptoms and possibly know what it is I have.

    (I was dx with lupus in the early 1990s with a positive COOMBS test - they didn't have a lot of tests back then...have mostly been in remission or have had mild symptoms until this year)

    Anyway, have had malaise and joint pain for years, just ignored it basically. 3 years ago I developed sicca and was told to use eye drops and mouthwash - had some tests and had a very low titre (1:40), speckled, was told it was nothing so I just shrugged and went on my way (a lot of people with no disease have that result and since I sorta felt ok...).

    Last spring I got very sick. Low-grade fever, malaise, joint pain, fatigue, weakness, and contractures of my little fingers plus a new symptom of shiny skin on my hands; also it seemed to me my mouth was shrinking (!) as I had actually missed my mouth when using utensils (embarrassing and strange). Fingers get off and on wrinkled like I have been in a long bath, and my fingerpads seem to be disappearing.

    The thing is, this never went away. I still have these symptoms - including the fever - every day, months later.

    I finally went to my primary doc and he ordered tests - all of which came back negative except for my ESR (45), slightly high basophils (1.4), and a low a/g (.97-1.0). Basically it just means I have inflammation. Since my crp was normal I am guessing it's not due to an infection.

    The tests were pretty extensive, btw: liver function, blood work, urinalysis, T4 (normal), anti-dna double Ab stranded, and dna antibody with reflex.
    SSA, SSB, Sm, RNP, SCL-70, Jo-1, Centromere B, dsDNA, and Histone - all negative. At the bottom it said "the possibility of autoimmune disease remains." Hmm.

    Never got a call back from my doctor so I assume he isn't worried. In my area, you can get your test results emailed to you, so that's how I know the test values etc.

    I see a rheumatologist in November but in the meantime I feel really ill. I had been thinking mctd, or scleroderma, or something like that, but now I don't know. Of course I am thrilled that most of my tests are normal! But I still feel rotten and would like to know...

    Anyone here ever have these symptoms/test results? Did you find out what it was?

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    Old 10-13-2014, 12:26 AM   #2
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    Re: Mystery Illness (so far)

    Three of your symptoms could be suggestive of scleroderma, the shiny skin on hands, the feeling your mouth is shrinking, and the fatpads of fingers shrinking. Do you have Raynaud's in fingers? That is a blue/purple, red or dead white discoloration of the fingers intermittently, especially with exposure to cold. It is often present in scleroderma and associated with the finger fat pad atrophy. Your other symptoms could be lupus related as well. Usually people with MCTD have quite high RNP antibodies. I think your appointment with the rheum will be helpful, as your symptoms, sed rate, and past + Coombs indicate a problem, but sometimes, symptoms precede the definitive lab evidence, and it takes time, observation, and repeat labs to really pin it down. I hope your rheum offers you some ideas and treatment to help you feel better!

    Last edited by ladybud; 10-13-2014 at 12:27 AM. Reason: typo

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    Old 10-15-2014, 08:28 AM   #3
    EarthElemental's Avatar
    Join Date: Sep 2012
    Location: Hollidaysburg, Pennsylvania
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    Smile Re: Mystery Illness (so far)

    Hi Ladybud,

    Yes, I have had Raynaud's for many, many years. I just got used to wearing gloves most places and using potholders to take things out of the freezer - funny how we adjust to things without being very aware of it.

    I agree about the RNP. I guess I will just have to wait until I see the rheumatologist.

    Thanks for answering.

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