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My symptoms + Lupus in Family...

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Old 01-06-2009, 06:30 AM   #1
Join Date: Jan 2009
Location: Il, usa
Posts: 2
Jaydee1217 HB User
My symptoms + Lupus in Family...

Hi, Im new here. I am a 38 year old female. I have had several negative ANA tests and 1 postive. The family MD i had was reluctant to diagnose anything. My symptoms are:
Swollen lymph nodes- neck, groin, armpit (almost 2 years now)
Hair loss- white rash in hair
random joint pain that moves place to place
peeling skin hands and feet
round rash (small ones) turns kinda white with scaly red underneath
numbness- tingly hands + feet
water retaining ankles
low grade fevers on and off
Small bumps under the skin on my face(cheeks)not acne
other hopefully non-relating things.
recurrent shingles..same spot everytime 1/2 dollar size
Gall bladder removed
Diagnosed Plaque Psoriasis.
I had a biopsy of the lymph node in my neck--told it was swollen lymph tissue
My uncle and my sister both have SLE. My sister died several years ago due to SLE complications. An ideas what I should do or kind of Doctor I should see. Thanks JayDee

Last edited by Jaydee1217; 01-06-2009 at 01:04 PM.

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Old 01-07-2009, 03:55 AM   #2
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Join Date: Feb 2004
Posts: 5,719
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Re: My symptoms + Lupus in Family...

Jaydee1217, Good morning. In your shoes, I'd see a rheumatologist. And I'd want him/her to start from scratch & review EVERYTHING. For example:

Confirm the psoriasis Dx. And if it IS definitely psoriasis, what kind? (I think there are different kinds. Maybe treatment varies somewhat?)

And if your "main" skin condition is NOT psoriasis, what is it???

If it's psoriasis, is it one aspect of some larger condition? For example, I've read that there are more than 100 types of arthritis alone, one being "psoriatic arthritis". (I'm NOT saying you have that! I only use this as an example of psoriasis being part & parcel of a broader condition.)

Or is the psoriasis (or whatever) *co-existing* with some other systemic condition, like lupus, etc.? (I say "systemic" because you obviously want an explanation for swollen lymph nodes, low-grade fevers, facial bumpiness, etc.)

Obviously I'm ONLY a patient & am only trying to convey what I'd hope to find in your next doctor. In addition to reviewing EVERYTHING, your specialist should take your family history & your own medical history as far back as you can provide. Should also redo all tests & send same to labs of his choice (the labs good rheumies use are better at doing such tests). Should refer you, as warranted, to other specialists of his choice (perhaps dermatologist, etc.)

I hope others here chip in with other thoughts & that you update us when you can. Meanwhile, I send my best wishes to you. Please keep at it, OK? Bye for now, Vee

Old 01-13-2009, 03:36 PM   #3
Join Date: Oct 2008
Location: Chester, Ct
Posts: 9
laura61 HB User
Re: My symptoms + Lupus in Family...

Did you say you have had shingles more than once? My daughter just got over shingles! She had a pretty bad case . She was hospitalized . She is currently under going monthly infusions of chemo and is on high doses of predizone! I hope it doesn't return.

Old 01-15-2009, 07:02 AM   #4
Join Date: Jan 2009
Location: Il, usa
Posts: 2
Jaydee1217 HB User
Re: My symptoms + Lupus in Family...

Laura..It sounds like your daughters shingles were much more serious than mine..I get a patch of shingles sometimes as often as once a month. The patch is usually no bigger than my hand though. I wish your daughter well and pray she doesnt get them again. Ive heard if you have them bad they dont usually retun..lots of luck..

Vee I went to my first doctor appt. yesterday and Im not real happy.. when the doctor looked at my list of symptoms she told me she was overwhelmed..
she took about 5 viles of blood put me on an anti-depressant called Amitriptyline and told me to come back in a month and she would call with my results. Unfortunately I just moved to this area and had to start all over with a new doctor. I have to wait for a referral before I can see a specialist. I'll let you know what the results are..thanks JayDee

Old 01-17-2009, 04:28 AM   #5
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Re: My symptoms + Lupus in Family...

JayDee, In lupus (etc.), answers (or at least big clues) are sometimes in the skin. If you can't find a rheumie or GP soon who gets you moving, what about trying a new dermatologist? Meaning, are you 100% sure that your various skin problems have been accurately Dx'ed? Did your drs. perform skin biopsies? And did previous meds/instructions actually help your rashes?

The recurring rash you call shingles: Are these totally separate lesions, in a different location from your plaque psoriasis? Do they itch, burn & sting? Where are they?---on photo-exposed skin? (I'm curious because shingles often cover a somewhat large area; and to respect the center line of the body, meaning limit themselves to right or left side; and to sting/itch.)

I'm asking because, while many drs. recognize a lupus butterfly rash & discoid (scarring) lesions, there are OTHER less-known lupus-specific rashes. For example, two distinct SCLE rashes. FYI, SCLE can be viewed as an intermediate "subset", typically falling between DLE & SLE. Unlike discoid, SCLE rashes tend NOT to itch, scar or depigment. They favor photo-exposed skin. Antibody most often found is anti-Ro. Here's how they differ:

SCLE annular form: Immature lesions are red, raised, non-itchy papules. Over time the papules "morph" into targetlike circles, then lose circularity, then merge together as they expand outward, finally fading without scarring or depigmenting. (I had this one for YEARS on upper arms/torso. A local dermie saw my rash in late stage, all spread out & merged; and he suspected *plaque psoriasis*---which didn't fit, because my skin didn't itch, flake, etc. Over time, sun made my rashes more widespread & morefrequent, instead of better. Other local dermies suspected Lyme, drug reactions, flea bites, etc. In contrast, a smarter big-city dermie knew exactly what to test for first.)

The other SCLE rash is called SCLE psoriasiform or papulosquamous: This one looks like psoriasis (but isn't). Likewise, it doesn't itch, scar, etc. It sometimes goes more widespread, I *think* (face, lower body, etc., in addition to arms/back).

You could find lupus hardcovers by reputable authors in your library. Dr. Daniel Wallace is a top choice; also Dr. Robert Lahita. Go straight to the skin chapter & see if anything rings bells. Of course, I'm ONLY a patient, but your skin comments made me curious. You've gotta be frustrated! (I was, too!) With my best wishes to you, Vee

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