I have been nervous about posting since i joined. I was told i have lupus 2months ago. Next i was told that 3 of the 11 criterea where definite, the fourth not so clear. So maybe its not lupus. Next i was told that my december parvo b19 infection may still be the cause of my arthrtis,swelling, burning pain, and inability to sleep. My ana was1:80 positive and speckled. The first time thet took it was normal. I have an mri coming up then i have to decide on biologicals. I guess i am just looking to hear stories of how you came to find you had lupus and avoided the diagnostic ups and downs. Ps. Forgive the errors, my nooks keyboard is a pain.
I was diagnosed in 98 with the butterflie rash I was pregnant at the time from ther I had
to do alot of research as the years passed I joints hurted more I would wake up and
My eye or lips would be swollen it was a little crazy I was in the hospital for like 3 weeks do to
Memory loss what I’m tryin to say is you never know what your goin to go through with this desease
just make sure u have support snd you take care of u
It took over a year for me to be diagnosed with lupus. I was told I had several different things before they said that was what it was. I had/have swelling of calves, ankles and feet, they hurt really badly, rash when out in the sun, and sores in my mouth, and brain fog...can't remember things. My ana was positive and my C Reactive Protein was 2.5. And as Monique said, it's important to take care of yourself and make sure you have lots of support.
Della
Hi Nikkimmm,
I really hope they find a proper diagnosis for you and your MRI scan goes well...i only had one the other day myself.lol
I was diagnosed 5yrs ago, started off with Lupus mimicing ringworm then i was sent to a dermo who ran tests and said i had bad psoriasis and i was treated with steriods, all bloods done 11, then 9, then 12 and constantley having them now, both my ANA/ENA came in high and was diagnosed with Lupus...then i was refered onto a Rheumo who checked 26yrs of history of me and told me i was born with it, as you'll see on my profile the list i have involved and from one day to the next it's one thing or another.
My youngest sister as just been tested saying it had been inherited and she came back positive with Lupus and skin trouble.
oh i am so glad you decided to post! You never half to feel like you have to hold back. We love hearing from all members because everyone is just a little different and when we are all communicating it is a healing, and beautiful thing---even if what we post is about awful, yucky stuff.
So : hats off to you, my dear...post away and never fear:)
(see what I mean...there is even a place for corny nerds like me here at lwl
I only have three criteria still. First one (thrombocytopenia) at 16, arthritis developed at about 25, positive ANA didn’t show up until about 29. I’m 39 now and still have multiple dx, although they still monitor me for a forth criteria to develop. So that’s 23 years since they started testing! I have several other symptoms but they don’t qualify as criteria. As long as they are treating symptoms I don’t worry about the dx anymore though. =)
janice said:
oh i am so glad you decided to post! You never half to feel like you have to hold back. We love hearing from all members because everyone is just a little different and when we are all communicating it is a healing, and beautiful thing—even if what we post is about awful, yucky stuff.
So : hats off to you, my dear…post away and never fear:)(see what I mean…there is even a place for corny nerds like me here at lwl
I wanted a second child so i went to do blood work to see if everything was fine and it was so i got pregnant a few months later, i went to my gyno and she did blood work, well something was wrong with my blood, she send me to a specialist and he told me it could be lupus or leukemia or numeros things or it could be nothing he said it could be my pregnacy making my blood go out of control so he said dont worry about it for now unless i get sick…so a few months later i started getting the butterfly rash and joint pain, fever, severe fatigue, loss weight…i told my dr. about the rash and she said it was maybe allergies, the fatigue was part of the pregnacy she said… When i was 32wks pregnant i went for my regular check up and she found out i have to much protein in my urine so she make me do more blood work and when she got the results she make me get hospitalized, 2days later my baby heart stop and they had to do an emergency c-section my baby was only 32wks and had to stay in the NICU for 17 days…right after the baby was out the Dr. Told, me i might have lupus i had blood clots in my placenta thats why my baby heart had stop…so next day i had my Rehumy, my kidney Dr, Gyno and a few more Drs. In the room telling me that they almost sure i have lupus and they did and ultrasound and a kidney biopsy and lots and lots of blood work and they finnally diagnose me…it was the worse day of my life…i was so scare and mad at the world but now i learn to live with it day by day…its no fun but we have to make the best of it…love Dunnia…
Ann A. said:
I was first diagnosed in 68-69 through an examination of the LE bodies in a tissue sample from lesions in my ears ( I got to watch them centrifuge my sample for inspection under an electron microscope). Every time my military family changed cities, I had to be diagnosed all over again. The best thing to ever happen to me was an older rheumatologist whose take on the criteria was, “if it walk like a duck, and quack like a duck, it is probably a duck.” Then he reminded me that there was no treatment specific to lupus. He pointed out that all they did was treat the symptoms. Last year was the first time a medicine for lupus only was approved. The rest of the treatment we get involves medicines that were designed to treat something else and then were discovered to also help us. From him I learned to concentrate on getting treatment for my symptoms (which have been numerous and various over the past 45 years - it is definitely a duck). I hope that they soon find a way to treat you effectively. And don’t be scared. Don’t be scared of posting and don’t be scared of lupus.
Hello Dunnia,
I can't believe what i've just read about yourself and your baby...totally disgusting and pushing it off when you both could have led to really serious problems and i can't believe they put the butterfly rash down to skin trouble.
Hows your babies health now Dunnia if you don't mind me asking and i'm really sorry for the circumstances you went through.
Love to you Terri xxx
Nikkimm you found the right group! Sigh, tests & biologicals. Knowledge is power-remember that and a Dr you trust!
My lupus dx wasn't so easy. 20 years + of pain, swelling, weird rashes. 1 specialist said it was my thyroid, so I had radiation. Then another specialist said it was my gallbladder so I had that taken out. ( normal pathology). Then I had cysts on my ovaries. So they went to drain it. Well the surgery wasn't so routine, ended up with a bleed. 17 units of blood later and 10 days in ICU, another 10 days on medical floor. I was lucky that I was in a trauma hospital. Even more insult, it was the trauma team that I worked on that saved my life. Yet still no dx. 4 yrs later, I got Valley Fever. I went to a Pulm Dr I worked with. He also referred me to a rhume. He is was the one who gave me my dx. Dr. Trent Smith. My hero. Even as an RN, I couldn't put all together. All my symptoms were not all at the same time. I just dismissed them. Sigh, I have been on several pills.. none worked. Lyrica helps with the fibro pain for me. I am also on flexeril, tramadol, vit d, vit b. Will be starting Benlysta in 2 weeks. I can't take Narc's because then I can't work. I can no longer work as a trauma RN, I work Hospice Case Management. Tried the chemo drugs, tried Enbrel for the RA. Benlysta has to work :-) So, ANA can be positive 1 day, then neg a next day. It doesn't mean a whole lot unless the other tests are elevated. The best time for me to due blood work is when I have the most symptoms. Trust and believe in what your body tells you. Don't be scared to ask about what you don't know. Take care, God Bless and Good Health to you.
Thank you so much for sharing your stories. I am feeling more confident. My rhumy really listens and seems intent on figuring out what is going on and making me funcional. In fact my mom has had trouble with her rhuemy and her dermatoligest told her i had one of the best. I went to the ER last week after a horrible stomache flu and his nurse called twice to make sue i was recovering and did not need to come in. My cymbalta seems to keep the fibro and brain fog in check. I alsotake tramadol for breakout pain. The course of pred i took dramatically reduced the swelling in my feet and legs. Only my hands really seen like a wild card. I have a stack of things i need to read about DMNARs. Wish me luck. I teach, so i dont get on very often, but it is great to know ur here!
Hello Nikki,
Your welcome and it all helps one another, yes well all ache and sometimes it gets to the point (well it does with me) what's the point of living, then i look at my hubby and that says it all and as the saying goes "Life carries on"
I hope you've recovered from the stomache flu you had and alot of the meds do help we, sometimes we have to be moved onto stronger drugs but it's better than suffering completely.
I'm starting Dapsone tomorrow a stronger drug than plaquenil and fingers crossed it will help me alot more but reading about the DMNAR's will help you understand alot more.
All the very best on looking up and understanding them more and it's so lovely having you with us.
Love your way Terri xxx
nikkimmm said:
Thank you so much for sharing your stories. I am feeling more confident. My rhumy really listens and seems intent on figuring out what is going on and making me funcional. In fact my mom has had trouble with her rhuemy and her dermatoligest told her i had one of the best. I went to the ER last week after a horrible stomache flu and his nurse called twice to make sue i was recovering and did not need to come in. My cymbalta seems to keep the fibro and brain fog in check. I alsotake tramadol for breakout pain. The course of pred i took dramatically reduced the swelling in my feet and legs. Only my hands really seen like a wild card. I have a stack of things i need to read about DMNARs. Wish me luck. I teach, so i dont get on very often, but it is great to know ur here!
Hello tez_20… My baby health is fine!!!.. I thank god for that!!!.. He is a very active boy and makes me so happy and tired lol…i have to chase him all day lol…hes almost 3yrs old and since he was a premmy i tought he was gonna have problems but he doesnt hes very smart and super tall like mommy…im 6’1 and both of my kids are giants like me lol…but thanx so much for asking about my baby…love Dunnia…
Tez_20 said:
Hello Dunnia,
I can’t believe what i’ve just read about yourself and your baby…totally disgusting and pushing it off when you both could have led to really serious problems and i can’t believe they put the butterfly rash down to skin trouble.
Hows your babies health now Dunnia if you don’t mind me asking and i’m really sorry for the circumstances you went through.
Love to you Terri xxx
Hi Dunnia,
Oh i'm so pleased for you that your boys healthy because i thought there may have been problems because of his weight but he sounds fighting fit and your one tall woman...mind you my youngest sister who also as Lupus is 6ft.lol
You takecare and all my love Terri xxx
Dunnia said:
Hello tez_20... My baby health is fine!!!!.... I thank god for that!!!!... He is a very active boy and makes me so happy and tired lol...i have to chase him all day lol....hes almost 3yrs old and since he was a premmy i tought he was gonna have problems but he doesnt hes very smart and super tall like mommy....im 6'1 and both of my kids are giants like me lol...but thanx so much for asking about my baby....love Dunnia....
Tez_20 said:Hello Dunnia,
I can't believe what i've just read about yourself and your baby...totally disgusting and pushing it off when you both could have led to really serious problems and i can't believe they put the butterfly rash down to skin trouble.
Hows your babies health now Dunnia if you don't mind me asking and i'm really sorry for the circumstances you went through.
Love to you Terri xxx