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Lupus?
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Lupus?

Teen daughter who was once a vibrant, active, social butterfly has been ill for over a year.  Started with headaches, abdominal pain and general fatigue.  Several ER visits, blood tests, doctors appointments, ultrasounds and xrays have ruled out of thyroid problems, crohns, ovarian cysts, appendix, Hpylori, gastritis and IBS.  Meanwhile my girl is getting worse.  Extreme fatigue, headaches, dizziness, hot flashes, nausea, muscle weakness, constipation, raynauds in feet, swollen toes and fingers, itchy rashes...all this on a daily basis.  She no longer has any "good" days, and has missed weeks of school.  The only thing her gastroenterologist found was a positive ANA 1:80...but it was not high enough to go to the next step of a DSDNA test.  She has a apt with a rheumatologist in June, but as a worried mom I am looking for opinions and advice on her symptoms and the ANA test which my family doctor doesn't seem very concerned about.  If it's not lupus...then what else could we be looking at?  Thanks
14 Comments Post a Comment
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8221281_tn?1397574572
What is the state of her general labs? CBC/CMP
Did they check her ESR, CRP Complement C3, Complement c4?
Do you have any idea what precipitated the onset of her illness?
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1340994_tn?1374197577
How about Celiac disease?  Blood tests.

My Raynaud's and migraines went away when I quit eating nuts and gluten and avoid dairy too.  I have Celiac and these other food issues.  
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1340994_tn?1374197577
Despite Celiac, I have more constipation than diarrhea, so don't let the constipation keep you from testing for Celiac.  
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Avatar_f_tn
CBC was normal.  As for the others, I don't have a copy of the results as it went straight to her gastroenterologist and rheumatologist, but was told that everything has been normal. I was only contacted in regards to the low positive ANA.  Her illness has been a progression of symptoms over the last year so no idea if any triggers were involved.  
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Avatar_f_tn
Sorry...there's been so many blood tests I left out some information.  She tested negative for celiac and was kept off lactose for several months but symptoms continued.  
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8221281_tn?1397574572
See if she can be checked for addisons / adrenal issues and pituitary
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Avatar_f_tn
No...I don't believe so.  But after you mentioned this I did some surfing and there were a few symptoms that definitely stand out that I haven't paid much attention to...salt craving!  She feels nauseous most of the time...but oddly enough eats plain pasta covered in seasoning salt and toast that she often sprinkles with garlic salt...maybe coincidence?  Also seems unable to control her emotions.  She had a bad experience last month at the hospital as the lab tech couldn't find a vein to draw blood and she had a complete melt down and cried uncontrollably for an hour. I just chalked that and other emotional outbursts up to the fact that it she's been through so much....and it hurt like a bugger.  I will definitely do some more research on Addison's...thank you!
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434278_tn?1324709825
Upon doing some searching, some possible causes can be scleraderma, west nile virus, Hypercalcemia,  Hyperparathyroidism, Porphyrias, and or Rheumatic Fever.  

The Raynauds might be significant or not - at her age.  Since she doesn't have joint pain, I think you could rule out lupus.  The hyperparathyroidism is a problem with the parathyroid (not to be confused with thyroid).  If the raynauds is significant, then scleraderma would be your main possibility.  

We are so very sorry your little girl is going through such a hard time.  Prayfully the rheumatologist can help you guys with the diagnosis.  If it is autoimmune, they are not easy to diagnoses.  The reason is the symptoms come and go and the lab results come and go.  So negative results really mean nothing.  
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8221281_tn?1397574572
I'm leaning more towards parathyroid or adrenal issues like Addison's
Sickteen77, since you are momma and you are likely going to want to do whatever you can to get your daughter well (its biologically ingrained in Mommas to be fierce advocates for their children) I will send you some instructions on how to get organized so that you can drive your daughters health care a bit better.
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Avatar_f_tn
Thanks for the insight.  I've researched most of those possibilities as well...Lyme Disease was another option but she has never been bitten by a deer tick that I am aware of or presented with the appropriate bite mark.  I may do some more surfing on West Nile...hadn't really thought of that since her symptoms started in the winter months.  I think the joint pain is there.  She has had a sore knee, neck, fingers, toes and wrists and her  joints crack.  Her entire body aches so it makes it hard to be specific. She has gone from advanced yoga to being unable to touch her toes and found pottery class difficult because her hands were weak and hurt.
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434278_tn?1324709825
Thanks for the updated information.  Joint pain, muscle pain, fatigue is all associated with lupus.  This is in no way a diagnostic statement.  If it is an autoimmune disease, they can be very tricky.

Praying for you and your daughter.  

There are web sites that allow you to put in symptoms and it comes out with possibilities.  
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8221281_tn?1397574572
Agreed sometimes the autoimmune screening panel needs to be repeated as sometimes labwork may not show positive in early stages of illness. The basic screens are not that expensive its the more in depth panels that are expensive and those aren't generally prompted unless the screening is positive (ie positive ANA)

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Avatar_f_tn
Well we saw the Rheumy and still don't have any definite diagnosis.  Possibly fibromyalgia with migraines and maybe Raynauds?  Her ANA came back 1:160 speckled and the rest clear.  No idea where to go from here but another doctor.  I just have this feeling that something is being missed.  I am having trouble with the fibromyalgia diagnosis and the treatment plan...push through the pain, go for a jog and get your life back?    
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434278_tn?1324709825
"Push through the pain... go for a jog"????  Wished it was that easy!!!  

The thing about autoimmune diseases, the symptoms come and go. And the labs are not always elevated.  Speckled is seen in Lupus, but also in other autoimmune diseases as well as some healthy people in low titers.  160 is not extremely high.  The doctor will probably continue to monitor her.  On the average, it takes about 10 years to get a diagnosis of lupus.  I would suspect it's about that with other AI diseases.  

As far as the drs advice.  Pushing through only makes my symptoms worse.  My body is fighting and to overexert it in that state only puts me into a definite flare.  

I've been sick since 07.  So far I've been diagnosed with fibro and connective tissue disease.  I was put on plaquinel in 08 because of an extremely high ANA (2,560).  It has made a huge difference.  
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