I have most all of the symptoms of SLE including seizures. My bloodwork came back normal except my CRP is high. I’m wondering if this will be enough to get a diagnosis?
HI JENNY LYNN,
PLS. I HAVE BEEN NEG. ANA FOR YEARS NOW & SUFFER TERRIBLY....I AM LIKE MY MOM, SHE TOO WAS ANA NEG. TILL THE DAY SHE PASSED.(21 YRS. AGO TOMMOROW 10/1/1990)..ALTHOUGH, I KNOW THAT THINGS R SO DIFFERENT TODAY, I DO FEEL I TAKE AFTER HER WITH THAT, AND THAT THERE IS SOMETHING VERY MYSTERIOUS TOO IT TOO, SOMETHING THAT BAFFLES THE DOC ALL THE TIME....CRP (C-REACTIVE PROTEIN IS AN INFLAMMATION MARKER) SO IT MEANS YOU HAVE INFLAMMATION IN UR BODY & YESZ IT IS SEEN IN LUPUS, ALONG W/ OTHER AUTOIMMUNE DISEASES....I HAVE SOME ODD ANTIBODIES TOO, THAT R ALWAYS POS....AND I ALWAYS MAKE THE DOCS SCRATCH THEIR HEADS, BUT I DO BELIEVE AS I ALWAYS HAVE BEEN TOLD, I "DO" HAVE A LUPUS-LIKE ILLNESS, AS MY MOM DID TOO, (THAT'S WHAT THEY CAL IT WHEN THAT ANA IS NEG.) ALL I KNOW IS I HURT AN AWFUL LOT, REGARDLESS WHAT THEY CALL IT!! GOOD LUCK & HOPE U FEEL MUCH BETTER SOON! I WILL KEEP U IN MY PRAYERS, OH & WELCOME, HAPPY U HAVE FOUND US HERE! :0) SUZIE
Thank you Suzie! That makes me feel better about fighting for a diagnosis. My sister has had RA for 20 years now and has never tested postive ANA or RA factor. I told my Rheumy this when I told him I was sure this is RA. Of course he did not agree with me but decided to order a battery of tests. I think he is thinking Lupus now. Funny cause I was talking to a lady my age in the waiting room and she had Lupus. She showed me her red hot puffy hands and my heart stopped. They looked just like mine. BUT, I pushed it away cause I've never had the "butterfly-rash". Once I let go of the RA and looked around a bit I discovered many of my other symptoms are all related. What an eye opener! I just pray my Rheumy agrees with me this time. I am so tried of the pain and seizures.
Thank you so much for your reply. I love making new friends, especially when we have so much in common.
Many Blessings,
Jen :)
U r so welcome Jen! I am happy u have found thisGr8 group of friends here, they r all so friendly…Listen, it is all so darn confusing this Autoimmune Stuff…Not only 4 us, but for the docs too…so just be persistent, do not give up, always have good communication with the doctors and ask questions, even if u think u may be bothering them, you need to learn about it all too…I always ask & always do my own research too…so we have a right to know what is dong it all! I am here if u need any advice or have any questions, this illness has been in my life for as long as I can remember, and I DO know alot about it, so please know I am always here…I will keep u in my prayers! Good Luck!! Keep Me Updated! TTYS! Suzie :0)
Jenny Lynn said:
Thank you Suzie! That makes me feel better about fighting for a diagnosis. My sister has had RA for 20 years now and has never tested postive ANA or RA factor. I told my Rheumy this when I told him I was sure this is RA. Of course he did not agree with me but decided to order a battery of tests. I think he is thinking Lupus now. Funny cause I was talking to a lady my age in the waiting room and she had Lupus. She showed me her red hot puffy hands and my heart stopped. They looked just like mine. BUT, I pushed it away cause I've never had the "butterfly-rash". Once I let go of the RA and looked around a bit I discovered many of my other symptoms are all related. What an eye opener! I just pray my Rheumy agrees with me this time. I am so tried of the pain and seizures.
Thank you so much for your reply. I love making new friends, especially when we have so much in common.
Many Blessings,
Jen :)
Thank you :)
I get so desperate to find an answer when I'm not feeling well. I am a results kind of girl and always have been. So nothing is more frustrating than when a doctor shakes his head and says he doesn't know. I'm like "just give me the damn drugs and let me get better!" LOL
The first time I heard about Lupus was like 20 years ago on One Life to Live. The actress died off the show within weeks cause her liver failed. So everytime doctors suspected Lupus my heart would drop to my stomach. Last thing I wanted or needed was a death sentence as a single mom. I've also been hiding my seizures from the medical community cause last time I went to get help for them they took my drivers license and I lost my job. I begged and pleaded with my neurologist to help me get it back. I swore to him I only have them a night and I never had them during the day. After that, I swore I would never report my seizures again. I can sence when I'm going to have one cause I get a weird aura, so I just pull over and shut my car off. They are mostly peti-mal and I just stiffen up and stare. They don't last that long either. I got in trouble so many times at school because the teachers thought I was daydreaming and my parents believed them over me. Employers get pissy too, and I don't tell them the truth for fear of loosing my job. The stigma of Epilepsy is so bad. People actually think its like being retarded. But now they are out of control bad and I made the connection because I remember last time I felt like this I was having seizures too. I thought it was from the medicine I was taking but I'm not on the same stuff this time. My husband is forcing me to go to a Neurologist and get help. I get it doesn't matter about my liscence now since I can't work anyway.
Blah, Blah, Blah, sorry I rattle on so much..LOL
TTFN,
Jen :)
May I ask how high is high? Mine was 1.7. Is that bad?