New too this Forum. Need some Help. (Lupus )

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genny333
New Member


Date Joined Jun 2015
Total Posts : 6
   Posted 6/28/2015 9:40 AM (GMT -6)   
Hi Everyone, I will try too make this short .
I've had Ra.since I was 20.Now 51.and found out throughout
the yrs.I cannot tolerate the drugs too slow down the Arthritis .
I end up in the ER. With allergic reactions too like Remicade infusions.
, Humera and Oriencia .
My good friend who's a RN.said you have the Butterfly rash .
So I went too my Primary too check.He ran labs and said My ANA
was positive.Followed up with my Ra.dr.She ran labs like the C-3 and C-4.
Now she's confused because...the test said due too unknown
substances - inconclusive .
Weird huh????
I went back thru some copies I had and over a month ago my C-4
was low.
I forgot too mention I have Fibromyalgia and get chest pains randomly
from when I take a deep breath . inflammation around the heart I've been told.Celebrex helps at times.
I'm also Very sensitive too heat and especially the sun.!!!
Now since Feb.1st. I've had a burning tongue with tongue colored bumps way in the back of my Tongue .
ANYONE with LUPUS, CAN Please help me ????I'm so Frustrated .
Also ....I'm always tired and exhausted.Hair thinning and my short term memory is very bad.:( Getting too be embarrassing.
Anyone I'd love too hear your thoughts????
Thank you .Janice.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7720
   Posted 6/28/2015 10:05 AM (GMT -6)   
Unfortunately, Lupus is not diagnosed by blood tests. In fact, your blood can say NO to Lupus, but you can still have it. Instead, Lupus is diagnosed by having 4 of 11 symptoms, blood work is only one of the possible symptoms. I'm surprised your rheumy is looking at only blood work, most rheumies today are more up-to-date on recognizing, diagnosing, and treating Lupus. You may need to get a second opinion from a more Lupus-aware rheumy.

Check out the link below, Diagnosing Lupus, for the symptom list.

There is a lot of symptom overlap between Lupus & Fibro. One way they distinguish between them is by prescribing prednisone. It generally improves Lupus, but seldom has any effect on Fibro.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

genny333
New Member


Date Joined Jun 2015
Total Posts : 6
   Posted 6/28/2015 3:15 PM (GMT -6)   
Lynnwood, Thank you very much for writting.I thought so but your
right my Ra.is acting like the blood should tell 100%.
She just had me do even another CBS and urine protein test.
Then she said too me....IF it's lupus even your CBS should be in the high 900's.
I am seriously thinking of going too another Ra.Dr.like you mentioned.
keep you posted on me results.
btw.do you have Lupus???
Oh!!! Our of the 11 symptoms I have I'd say 5 .
1) Joint pain and stiffness.
2)Hair thinning
3)Red face 24/7 for yrs..Sun Sensitivity . Rash on rt.armif in sun.
4)Short term memory issues.
5)Burning tongue/cracks/and lower inner lip hurts and burns.
6)Always Exhausted .
I'm sorry guess it's 6 out of 11 symptoms .
Ttys. Thank you from Janice.

<Removed extra blank lines>

Post Edited By Moderator (Lynnwood) : 6/28/2015 5:05:44 PM (GMT-6)


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/28/2015 3:57 PM (GMT -6)   
I agree that you need to see a different Rheumatologist.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

genny333
New Member


Date Joined Jun 2015
Total Posts : 6
   Posted 6/28/2015 5:04 PM (GMT -6)   
Couchtater, Thank you so much for writting.
Do you yourself ever have where your tongue feels
burnt???
Janice.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7720
   Posted 6/28/2015 6:08 PM (GMT -6)   
Yes, I have Lupus. Your Dr is WRONG, Lupus doesn't show up with "high CBC".

Best way to find a good rheumy - check out www.lupus.org and find your local chapter contact info. Contact the local chapter and find out which local rheumies are active on the advisory board. These are the Drs who are interested in Lupus in your area - choose from them!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

genny333
New Member


Date Joined Jun 2015
Total Posts : 6
   Posted 6/28/2015 7:39 PM (GMT -6)   
Lynnwood , Thank you so VERY Much !!!! :)
Had a feeling she was wrong on that CBS Lab work.
thanks,Janice.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/28/2015 11:14 PM (GMT -6)   
Janice, I've had times when my tongue burns if I drink orange juice.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

genny333
New Member


Date Joined Jun 2015
Total Posts : 6
   Posted 6/29/2015 11:30 AM (GMT -6)   
Hello Everyone , I got copies of some of my Labs and noticed my C-4 Was Low.But the C-3 was on the low side but in range.Anyone else with Lupus ever get these results????
Thank y I u Janice.
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