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Old 09-28-2012, 06:23 AM   #1
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Question Medical history of family with Lupus?

I do not have any DX but the testing is plentiful.

Initially they told me I had a b12 deficiency... Then I tested high for SSA... The doctor said she thought it may be lupus. But I told her I didn't have a rash!

But since I have numb feet and tingling I had a nerve conduction test and an MRI.
My MRI came back clean, so MS is ruled out...

Some of my other symptoms are:
I had a fever for about a month, never over 100.
I am exhausted all the time. Especially after being outdoors.
I also have these chest pains that feel like maybe a panic attack? It is so hard to explain this. I feel an irregular heart beat... Like my heart is trying really hard to do its job. Then, I feel like I can't really take a deep breath. The pain when I breath isn't sharp. I can't explain...
Tingling in the backs of my legs... Like chills.
Numb feet
Dizziness
I feel like I shake inside so that I tremble on the outside.


Anyhow, two of my Dr.s have asked me if I have a family history of lupus or autoimmune disease.

I don't know this information and I'm not sure why this is relevant. I don't think I do have a family history of these illnesses.

Do they think it may be Lupus? This is now the second Dr. to mention the "L" word.

I'm a bit scared, but I've been sick for three months now, and I just want to feel better.

Last edited by Fighting4my3; 09-28-2012 at 06:25 AM.

 
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Old 09-28-2012, 11:14 AM   #2
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Re: Medical history of family with Lupus?

Some of your symptoms could be from lupus, but you need to be tested for it. Have you had that done yet? One doesn't need to have a family history, but autoimmune disorders tend to run in families, so Drs usually ask. I would think if they have questioned lupus they would have tested you for it, since you had an SSA run (an antibody often positive in Sjogren's syndrome.) Can you get a copy of your lab results to see what else was tested and results? That would be helpful.

 
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Old 09-28-2012, 11:12 PM   #3
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Re: Medical history of family with Lupus?

Hi. I think autoimmunes can run in families somewhat, but they can be different ones. In my family, we have type 1 diabetes, Hashimoto's thyroiditis, and lupus. But I think the doctor's question makes total sense because SSA (anti-Ro) is seen in both lupus and Sjogren's syndrome. I tested positive for it but was diagnosed only with lupus. However, it is possible to have both.

You can have lupus without a rash. Over time, I think over 50% of people with lupus get some form of rash at some point, but not all and not necessarily early on, is my point.

Did your ANA test positive? I ask because in Sjogren's, I think ANA is often extremely high, with 1:2580 not being unusual; and rheumatoid factor can also be very high.

Here are other useful tests & meaningful symptoms for when lupus &/or Sjogren's are suspected:

for SJOGREN'S. Hallmarks are dry eyes, dry mouth, and arthritis. Salivary glands and tear ducts are affected, but other parts of the body may be too: dry cough, hoarse voice, fatigue, joint pain, interstitial lung disease, thick blood, other blood disorders (including lymphoma), and SCLE rashes. Dry Schirmer's test measures the amount of tearing; Rose Bengal stains look for corneal scarring & pitting; but the most definitive is lip biopsy [ouch!].

for LUPUS. People generally (not always) must meet 4 or more of the ACR criteria, which you may find in the sticky posts (= permanent info posts) at the top of the thread list. The "alternative criteria" you see in the same section are also useful. These ACR criteria may be met over time; once fulfilled, each should be considered permanent (envision making checkmarks in indelible ink).

One test that can be done in equivocal situations is the lupus band test (LBT), a deep-punch skin biopsy which is first inspected under the microscope for telltale cellular changes, then subjected to immunofluorescent stain tests. If the stain tests reveal linear bands, such bands are considered diagnostic of lupus. (Lupus deposits "immune junk" between the dermal & epidermal skin layers; that's what's lit up by the stains.) The LBT may be done even if no rash is present.

My symptoms seem fairly similar. As a young child, I had extreme reactions to sulfa antibiotics (convulsions, not rashes) and extreme swelling from insect bites; those are both "alternative critera". At age 7, blistery rash head-to-toe rashes (probably bullous lupus). Severe joint pain & pain along the long bones starting at age 13, with low-grade fever, elevated sed rate, depressed WBC, and fatigue. Menstrual problems ongoing. By my mid-20's, severe IBS that persisted for 20+ years. Then chronic cystitis. Then migraines, persistent B-12 & Folate deficiency, and tingling (so unnerving that I suspected mild MS.) Dead last were photosensitive rashes, which consisted of nonscarring circles on upper arms and back; this rash was later diagnosed as SCLE annular form. This rash correlates heavily to anti-Ro.

Aside: there's a second SCLE rash called papulosquamous or psoriasiform. It looks like psoriasis (but isn't).

My local specialists were clueless; in their beleaguered minds, you MUST have a malar rash or positive anti-ds-DNA or anti-Sm to have lupus... not true! Anyway, I finally took myself to a metro teaching hospital rheumatologist and was speedily diagnosed with lupus, a "subset" called Ro-lupus in which anti-Ro is positive but ANA is "masked" and thus stays negative (this is very rare, a positive ANA is far more common). I wasn't diagnosed with Sjogren's, though. I'm lucky to remain "subacute", meaning no major organ involvement; my three worst episodes & hospitalizations actually preceded Dx by some years. I've done much better day-to-day for some years now, with Plaquenil and strict sun avoidance.

The only anti-Ro lupus patient I've talked to at some length had pretty much the same, but she also tested positive for antiphospholipid antibodies. (Look for the section in the sticky posts that discusses APS.)

In your shoes, I'd borrow library books that discuss lupus, Sjogren's, and how the two are differentiated. Just curious: is your doctor a rheumatologist? I hope this helps some & that you post again soon. And hang in there! Sending my best wishes, Vee

 
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