Hi there everyone! Wanted to introduce myself to you all and thank you for the warm welcome.
My name is Heather, I’m 24, and on Friday I was diagnosed with SLE. I’ce been having elevated ANA levels for the past few months and my Hemonc wasn’t really sure as to why so she referred me to a Rheumie. My first few tests came back relatively normal however my main titters showed a 1:320 speckled pattern. When I saw the Rheumie I honestly thought nothing of it; I figured my symptoms were just side affects of my possible LGL Leukemia that I’m still waiting for a possible positive diagnoses as well.
Now looking back at it, there’s a LOT that stands out to me as clearly being caused by the lupus. My first year of college for example, I was told by my PE instructor that I had, “the flexibility of a old woman”
I’ve never had the malar rash, but have had rashes crop up and super sensitive skin. Achy joints, mostly in my hips. Been loosing my hair by the handfuls, and the fatigue is the worst thing in the world. I also have blue fingers and toes, mostly during the winter.
Paquenil was suggested by the RA doc but my Hemonc is having me hold off on it for the time being as it can lower blood counts and I can’t really risk having even lower blood counts then I already do. I’m presuming that if I do have the LGL Leukemia, I’ll be placed on MTX which will double over for the Lupus symptoms as well.
Anyways! It’s nice to meet you all and I’m hoping that I can learn some good information here since I’m a new lupie, and haven’t a lot of information going on for myself.
Good for you for jumping right in and starting a discussion! You have a lot to do deal with right now, and you get lots of support from members here. Its funny that you mention your PE teacher telling you that you had the flexibility of an old woman, I can recall being told that years ago.
Please keep us informed of diagnoses, and you're in my prayers.
im sharon was diagnosed when i was 19 with antiphosphlipid syndrome then was told i had sle at 35 im having the same problems with my blood results as well so i cant go on any of the drugs for lupus
good luck with everything we are all here for you take care xx
I am so glad you are here. You have a lot on your plate to deal with for sure. I was diagnosed about 15 years ago but I am sure I even had this during my childhood. I was never quite as strong as any of the other children I grew up with and it always made me feel different. I had fevers and fatigue on and off with no explanation. I couldn't play outside in the sun for long periods of time because it would make me feel like I had the flu. It is weird how once you get diagnosed that all the pieces of the puzzle start fitting together.
My name is Ilene and I am 64, an old Lupie. I was informed about Lupus December 2010, but I think I had it years before but my doctors were stupid and did not know about the disease. I never had the rash on my face but I do have the hair falling out, and that bothers me because I still work in the public eye. I do have a rash on my rite let down by the ankle which I have had for 7 years now. I have also had Cancer. Endometrial Cancer which ended up with a total Hysterectomy. I am blind in one eye, I have a torn cuff in my rite arm and a blockage in my heart. I am on Plaquenil, Predisone, Gabapapin, Lasortan, Baby Asprin. Fatigue is very bad, I take many naps throughout the day. But its great having this chat line to vent to when things are going bad. If you want to vent we are here for you.
Nice of you to introduce yourself and what's been happening to you...Heather you was having elevated ANA's due to the Lupus fluctuating your blood as it causes false readings at times but titter levels are very important and can highly diagnose a problem with other tests for confirmation.
I'd like to suggest you joining the Raynauds group on the main page as it's highly possible you have signs of raynauds, although i'm not a doctor to diagnose but having it myself when symptoms are described you seem to know.
Needing to know about Lupus more these two links may help you alot also.
Welcome! It's funny how much stands out from our past once we're diagnosed. This site is an amazing place for information and support. I'd be lost without this group/site so jump right in!
Your right there since i was diagnosed and looked back on my past history since growing up, things have fallen into place besides seeing my parents have issues on illness.
Terri xxx