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Thread: Does this sound familar?

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    Default Does this sound familar?

    I really don't know what I have - I am feeling very well these days. Planquinell 400mg is keeping joint paints at bay and mouth sores to a minimum. Yeah!

    So I have a couple of symptoms that I haven't heard anyone mention and I wonder if they are diagnostic -
    - I get these wild burning sensations in various small patches on my arms, face, chest and back, then it itches like crazy in about a day a small sore appears, it bleeds then scabs over continuing to itch for a week or so. Now one has been very intese and has lasted three months but mostly it's just a week or so. I have about five going all the time. Do any of you get these? What CTD does it relate to? they are very small, like the size of a pea
    - Secondly I have a lot of stiffness in my hands, primarily the digits on both hands, worse in the morning and it doesn't feel like joint pain - it is more like a bee sting or a bruise.

    I always forget to mention these to my dr because they are not as bothersome as the other stuff (which is now controlled, primarily dry eyes and GERD which they say now is esphogual dysmotility, but finally controlled by PPI)

    Forgive me for taking up your time on these not so troublesome issues, I'm just wondering if they are diagnostic more than anything. I am running out of patience for a proper dx. And thanks much for your input.
    much love to all my lupie friends -

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    This sounds really familiar to me. Though I've had the burning itching patches for years before I started on the plaquinel. My eye doctor tells me the itchy and dry eyes thing is from the plaq and is watching me closely.

    Talk to your rheumy, I'd be curious to know. I was just there and never thought to add that to my list as it's a symptom I've had for over 40 years.

    Nonna

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    Yes, those little itchy, scaly sores were early symptoms for me. Back in 1999, I had to beg the PCP that I had at the time to pay attention to them. She reluctantly took a sample of one and was surprised that it had T-cells. She thought that it was something called lymphomatoid papillosus. Now, it seems that it was probably related to my AI issues. I always had two or three of them, especially during hot weather or if I was stressed. I started on Plaq a year ago, and I haven't had one of those sores since! I also haven't had a sore in my scalp, which the rheumy in Texas said was psoriasis.
    My fingers and hands have been stiff and sore lately. I just figured that it's the RA.
    Hope this helps.
    Hugs,
    Marla

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    I get tiny little bumps that have such an intense itch it amazes me something sooo tiny could be soo bothersom! I also get little blisters that don't always have as much itch/burn. I can not believe you do not have a DX yet...like my Rheumy said to me after having gone to others.."whats the big mystery here"...meaning it was sooo obvious.
    Andrea

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    Oh goodness thanks. It puts my mind at ease. I thought I was developing my own private disease. LOL!

    So Andrea - you're saying it's Lupus - they called it huh? How are you?

    Nonna,you have a lupus dx? Not MCTD or UCTD or overlap or anyting like that?

    Marla, if I remember correctly you have MCTD - you're own private version. Lucky you, huh? So anyway those sores could be from anywhere in your case. But sounds like Lupus is the main culprit.

    The sores that I used to get in my scalp were a bit different, they were big flat blisters that itched... huh. maybe not so different :O well anyway those are cleared up on the plaquinell.

    yeah, no real DX at this point. He called it Lupus at one point then withdrew and is speculating that it is CREST scleroderma, but I think MCTD because of these sores - I don't think scleroderma gets them and also the mouth sores. It could be sjorgen's too IMO, looking forwrd to Marla's report after the conference. I also think (but don't really know for sure) that because planquinel is having a positive affect that it tends towrds Lupus - I don't think planquinell is effective with SSc. Don't know about the sore fingers though. Worried that could be how CREST starts. If so it is very slow in developing for me though. I have developed raynaurds and stupid tiny spider vains on my face - and esphogal dysmotility - all symptoms of CREST which I guess is really called lSSc now -

    Marla, does your MCTD have many SSc features? My sister has RA straight up but non of those symptoms for me.
    Last edited by karenboss; 03-10-2010 at 03:39 PM.
    much love to all my lupie friends -

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    I know I'm supposed to have Lupus SLE. what is DX? I've always chalked the burny itchy patches up to nerves.
    I have 1 major spot that when you look at it there's nothing there unless I've scratched with something cause I can't really reach it.

    Marla please explain MCTD

    Nonna

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    Ok, I have a question. After looking at the picture on the links that Saysusie posted in the sticky, I've decided that I'm at a lost.

    I have itchy spots sometimes they are red, sometimes they burn. My face has the butterfly shaped redness, but not a ulcerated or pimply. So do I have lupus rash or nerves???

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    The docs call it MCTD when you have symptoms of several overlapping AI diseases and there is not one that is clearly the culprit. Here's one definition: Mixed connective tissue disease is a term used by some doctors to describe a disorder characterized by features of systemic lupus erythematosus, systemic sclerosis, and polymyositis. It doesn't always have to be those particular AI diseases, though. I have my own set, and others have theirs.
    There is also UCTD, or undifferentiated connective tissue disease. I think that a lot of us have laughingly said that this is what the doc says when he doesn't want to say "I don't know". I think that they say this when they "know" that you have one, but one hasn't emerged as the culprit.
    I hope this helps. You can look both of these up online if you want more info.
    Hugs,
    Marla

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    hi karen,

    i also have the issues with the hands and fingers. My hands feel like they are on fire, and hurt between the joints, not in the joints. After i started plaquenil, i got a lot of relief from these issues...my dr. feels the hand issues are either sle or fibro...

    I also get the little sores, they appear, aggravate me for a while, then just dissappear. However, if you have one that has been there for an extended time, you should probably make the call to your dr. and let her/him know....i never really know how long they stay....some seem to linger for weeks.
    Phyllis

    share a smile today

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