Questions About Lupus?

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ThatOneGirLMandy
New Member


Date Joined Nov 2014
Total Posts : 3
   Posted 11/21/2014 4:46 PM (GMT -6)   
Hello everyone
First off, I apologize if I have posted this in the wrong area.

I have a few questions about lupus. The rheumatologist I seen said he is pretty sure I have lupus due to the lengthy list of mild to awful symptoms I have had for awhile and now waiting for blood work for 100% diagnosis.
I saw him the 13 of November so it has been nearly 2 weeks.

My questions are:
*How long does it take for a full blood panel lupus test come back?
*Can I still have lupus if tests come back negative?
*What's a false positive for lupus mean?
*Is it true some lupus patients get low doses of chemotherapy and if so, when does that happen?

I was going to type out all my symptom and my overall health issues including epilepsy which now I am thinking is a symptom of lupus, but I am pretty achy today so I will make sure to introduce myself properly another time.

Thank you to all in advance.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 11/21/2014 6:53 PM (GMT -6)   
My questions are:
*How long does it take for a full blood panel lupus test come back?
My rhuemy said one month, but I think it can be faster in certain areas.

*Can I still have lupus if tests come back negative?
Lupus is diagnosed by a list of 11 indicators. You'd need atleast 4 of the 11. Positive bloodwork is one of the 11.

*What's a false positive for lupus mean?
Having positive bloodwork but no other symptoms on the checklist.

*Is it true some lupus patients get low doses of chemotherapy and if so, when does that happen?
The medications are given to cancer patients at much higher doses. It's to lower our overactive immune system. First meds are DMARDs. Some are chemotherapy drugs.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

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

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 11/23/2014 7:46 AM (GMT -6)   
Did the rheumy have you scheduled for a follow up appointment? They may wait until then to see you and may have based it on how long the blood panel results will take.
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

ThatOneGirLMandy
New Member


Date Joined Nov 2014
Total Posts : 3
   Posted 11/23/2014 8:46 AM (GMT -6)   
Yes he wanted me to specifically tell the receptionist to schedule me for 4 weeks from the 13 of November since 3 weeks from then os Thanksgiving but she had to schedule me for 5 weeks since he was booked.
I asked him if he had to diagnose me right now without blood work, wht would he say was going on based on photos I showed him of awful rashes that look like whip marks or raised welts, patches and blisters plus sores on my face that has caused ugly scarring, a tender bump on back of lower left side of head that comes and goes, chronic ear infections, earpain and swelling ive also been told I have a sore that comes and goes near my ear drum, red swollen joints mainly hips, ankles and elbows, hair loss, seiuzures, pleurisy 4 times and turned into pnemonia twice in the last two years amongst a ridiculous long list of several other symptoms including epilepsy but now wondering if I was misdiagnosed 7 years ago when I was20 years old when it was actually a symptom of lupus.
I just really want to know whats up and start treatment asap if it is infact lupus. I am in pain constantly and always feel like I have the flu minus vomiting plus wheeze so bad mainly when I take deep breaths or try to sleep. Its becoming old. It takes me nearly a whole hour to get out of bed in the morning.
I am incredibly grateful I actually have a doctor listening to me after several years of doctors telling me its either in my head, I am over exaggerating or lying to get pain medication even though I never ask for them.

Thank you both for replying!

ThatOneGirLMandy
New Member


Date Joined Nov 2014
Total Posts : 3
   Posted 11/23/2014 8:53 AM (GMT -6)   
Oh and the doctor said if he had to diagnose me right the and there he said lupus and was concerned there may other issues such as anemia, low blood cell counts, dehydration and mal nutrition as well since I can go 3 or 4 days witgout eating due to no appetite and/or severe nausea. Whats strange is even though I usually cant eat, I still weigh 20 pounds over my normal weight but when I take antibiotics I shoot back down to 115. A few days after antibiotics finished I shoot back up to almost 140. Would you think this is infection or swelling? I'ma little worried about that. I know this is a forum for lupus patients and not doctors but I am so lost in all this and incredibly frightened becauseI know my own body and know something is really wrong. I guess I just need some other peoples input.

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 11/23/2014 9:22 AM (GMT -6)   
If anything alarming shows up in the blood work I am sure the office would call you right away regardless of your scheduled appointment.

I know the waiting can be stressful :(
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

Shayad
New Member


Date Joined Nov 2014
Total Posts : 3
   Posted 11/23/2014 1:16 PM (GMT -6)   
Hello everyone. I have a question hope someone can help me.

5 years ago I had blood work done and my results where: ANA positive, Titer Sparkled, 1:80. year later I was having pain all over, especially my ankles, where swollen. I went to the ER and showed the copie of my tests and they thought I have Lupus. Tests came negative. I changed my primary physician and the new doctor told me I have RA, because by then my wrists and knee hurt a lot, but my RA test always comes negative. Doctor said I was seronegative, thats what they call it? I do get nodules and my bones swollen, now my hip is killing me. OK, my question is? Is it Lupus or RA? could be a Lyme, since I was bit by deer tick few times, and since my husband at same time was diagnosed with MS. If I had Lupus or RA, why are tests negative?

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 11/23/2014 1:56 PM (GMT -6)   
Shayad,

I suggest you see a rheumotologist. They are the Drs who know all the subtle nuances of how Lupus and RA act, and how to read all the tests and evaluate your symptoms. Neither of those illnesses is diagnosed by blood tests alone, your symptoms have a huge effect of determining your diagnosis.

Primary care physicians are not trained in the details of these and other auto-immune disease -- not only are they not great at diagnosing them, but they are NO GOOD at treating them. Seeing the right Dr can make a huge difference in your treatment and how you feel.

Good luck.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 11/23/2014 2:04 PM (GMT -6)   
You can have seronegative RA. If you have knots on joints then it probably is inflammatory arthritis. My RA test says high normal but xrays and knots on joints say inflammatory arthritis.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

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

Shayad
New Member


Date Joined Nov 2014
Total Posts : 3
   Posted 11/23/2014 2:20 PM (GMT -6)   
Lynnwood

Thank you very much for answering me, True, I need to see Rheumatologist.
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