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A MyLupusTeam Member asked a question 💭
New Orleans, LA

What were your symptoms/lab results that lead to your diagnosis? All of my lab work has been positive for lupus for a year, but my dr won't diagnose me with anything but fibromyalgia bc I don't have a rash and my joints aren't red and warm. I have joint and muscular pain, muscle twitches, extreme fatigue, sensitivity to hot and cold, numbness, pins and needles, and pretty bad tremors. I'm getting a second opinion in a couple of weeks.

June 22, 2017
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A MyLupusTeam Member

1 rheum I had: facial rash, fatigue, underweight, livedo reticularis, raynauds, joint pain with redness (but no swelling), body rash, + ANA 1:320, + Anti Ribosmal P, + histones. No Lupus dx.

2nd rheum I had all the above but with : discoid rash, oral sores (have gotten infected), neuorpathy, photosensitivity. Labs: + ANA 1:320 (5x), occasional low wbc, low neutrophils. Said nothing is wrong with me and they lowered the plaqunil my pcp had put me on so I got chest pain.

3d rheum, I was dx'd instantly with SLE no labs needed. Take pics of everything. I also made a 1 pg bulleted list of all my symptoms with a timeline. Took me 3 yrs for diagnosis. It is very frustrating :(
Hope this helps !

June 22, 2017 (edited)
A MyLupusTeam Member

Check to see if you may have RA since you have no skin problems maybe just be arthritis.

June 23, 2017
A MyLupusTeam Member

I'm glad you're getting a second opinion. Many doctors don't understand lupus.

June 23, 2017
A MyLupusTeam Member

^ Meat I would go to a university or major rheum such as mayo, celvland, hopkins. I had to cuz of all the bull. Bring all ur old labs there. I highlighted all my labs with all the abnormals and counted up next to each the number of postive ANA's, low cell counts, ENAs etc. If they again say no SLE, I would fight them on it for UCTD. Maybe think about telling them that u feel bad and are concerned with the DS DNA and ask if they think that maybe starting Plaqunil to see if it helps for UCTD so u don't develeop more SLE symptoms down the road is a good idea.

June 29, 2017 (edited)
A MyLupusTeam Member

Not in my legs but in my arms yes. I lean on my right arm and it gets tingly and numb. When I brush or wash my hair my shoulders start to hurt and when I put my arms down after they feel heavy like I'm holding a sandbag.

June 26, 2017

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