Lupus?

Symptoms & Treatments
1

I have been told I was negative for lupus by a blood test. So the dr says my previous diagnosis of fibromyalgia and arthritis is correct. Well today I get a call from my sister saying she has been diagnosed with lupus and that her dr told her to tell all her sisters they need to be tested because it’s is 97% genetic. She had been given a diagnosis of fibromyalgia last year. My question is could I actually have lupus even though the blood test said it was negative? I have all the signs and symptoms.

2

Hi, Tarra.
Have you discussed your sister’s update with your doctor?

Also, we have a lupus community-



http://www.lifewithlupus.org/



Please feel free to join. There is a great deal of information as well as many supportive members.

3

I tried. Left her a message to call me.

4

I hope you hear from her soon, Tarra.

Hugs,

Laurie


Tarra said:
I tried. Left her a message to call me.
5

Hi Tarra, like BaltimoreBaby said, a great place to get information is the Lupus site we have. Feel free to join it even if you aren't diagnosed, I am sure you will find the information beneficial. Please keep us updated on how you are doing. Hugs.

6

Thank you

7

Was your sister diagnosed by blood work as well as symptoms ??

I would be interested to see how this works out for you - my docs were sure it was Lupus as my main symptoms have been joint pain (4+ years) - it's only the last 6 months or so that things have become more fibro like. My blood work is negative for Lupus...but I also have a weak immune system and inject plasma regularly, so I wonder if that affects blood work.

Anyway....keep us posted.

8

Yes sister tested positive

9

Got my new lab results back this morning they said that the lupus test was negative again but that the inflammation test was positive. Shouldn’t that cause them to dig a bit deeper? I hate to change doctors and have to start all over. Someone give me an idea of what I should do. Please.

10

My sis has been diagnosed with hyperthiroidism (spl?) & she is adamant that I also have it. But.... my thyroid has been tested so often that it is getting a complex!!! & then I think another relative has Fibro or at least chronic fatigue syn. So there you go. You can tell your sis MY story if you wish. M

11

Hi Tarra, Did you get a chance to ask your doctor what the inflammation results mean? I also have an elevated inflammation lab value but my doctor feels it is ok, we just monitor it. There could be many reasons for an elevated lab value, your doctor is a good place to start. However, if you are feeling like it is time for a medical change, it would be good to request copies of all your tests / labs, etc from your current doctor so you can bring to your new doctor, it might save you money in the end in not having to repeat tests. Hugs.

12

All I was told is that its the reason I’m have so much pain. They put me on predisone, and left it at that.

13

Hi Tarrra,

When I started seeing a Rheumy several years ago, he diagnosed me with Fibro right off, but also tested me for Lupus. The main test they use ANA, was positive for me, but the other tests were negative. He tested me twice a year and nothing ever changed, He would always say I didn't have lupus YET, I eventually stopped seeing him- only bc I didn't feel my copay was worth only being tested twice a year. I see a Neuro and she has told me that my positive ANA along with the other test results (ie. I have a titer of 1:40) can be because of the FIBRO.

Good luck to you and your sister.