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Ashleybritton
08-28-2012, 04:08 PM
I hope you don't mind me coming here for advice. The past 3 months have been a whirlwind for me. I delivered my son prematurely 3 months ago do to what was thought to be atypical HELLP (atypical because the only symptoms I had was proteinuria and low platelets). It has been determined that I did not have HELLP. I currently still have both symptoms which led my hematologist to do further blood work. I just found out I had a positive ANA test and will be seeing a rheumatologist in 2 weeks. I'm at a loss because other than my blood work I feel fine and have never had lupus symptoms.

Here is what I know:

Prior to pregnancy platelets were in the 130's
During pregnancy platelets were in the 60's
Postpartum platelets are in the 80's

At 34 weeks protein was a +2
Currently I have trace proteins and blood in my urine
Positive ANA - unknown numbers
I have an Aunt who was recently diagnosed with lupus

I'm curious if I have lupus, but have yet to have a flare up. Is that possible? I don't have any symptoms other than the bloodwork. I can't speak for the ANA, but it seems as though the platelet issues are pregnancy related. I'm not sure why I was spilling protein because my blood pressure was perfect.

I know you guys can't diagnose me, but is there something else I could be missing? All I can think of is lupus. I have this beautiful new baby and I'm just so sad to have my mind on this when I should be enjoying him.

Thank you so much for your insight! I hope my inquiry isn't offensive. I truly appreciate your help.

Ashley

Nonna
08-28-2012, 05:35 PM
First, listen to the doctors. I have 2 fantastic children 40 and 35. At the time they were born. I believe I had lupus but don't know so sure as I had no tests. I was healthy and active. Lupus affects everyone differently. I wish you luck and welcome to the site

Deemarie1223
08-28-2012, 08:02 PM
Hi Ashley, though I am not a doc, it does sound like your on the right track. When I was pregnant with my now 13yr old don, I had protien in my urine all the time (+3), they finally did a 24 urine test and I had TEN TIMES the normal amount if protien in my urine (severe protenoria). I had no symptoms otherwise, now all these yrs later, it seems like every wk I have a new symptom. It's been a long road for me, hopefully the will treat you so you won't have to go through that. Welcome and congrats on your blessing!!!

Ashleybritton
08-28-2012, 09:23 PM
Hi Ashley, though I am not a doc, it does sound like your on the right track. When I was pregnant with my now 13yr old don, I had protien in my urine all the time (+3), they finally did a 24 urine test and I had TEN TIMES the normal amount if protien in my urine (severe protenoria). I had no symptoms otherwise, now all these yrs later, it seems like every wk I have a new symptom. It's been a long road for me, hopefully the will treat you so you won't have to go through that. Welcome and congrats on your blessing!!!

Were you able to deliver at full term? Also, I'm wondering if it would no longer be a wise idea to add to our family. We were hoping to do so soon. Is there any hope that I don't have lupus? It's so strange to me because with my Aunt she always struggled with extreme fatigue, she could barely get off the couch it was so bad. I can't say I have any symptoms at all, but my bloodwork is telling me otherwise.

I'm so sorry to hear you are struggling with symptoms. :(

tgal
08-28-2012, 10:01 PM
There is no actual test for Lupus but with the other things going on with you and you having a family member with it, the doctors are doing the smartest thing. To answer your question, yes, you can have it and not have outward symptoms although it is rare because usually it is the symptoms get you to the doctor. The ANA itself is not a Lupus diagnosis and people without Lupus can have it as well but it, and the protein in your urine are just making your doctors check into it.

Remember this as well. There are many degrees of Lupus. From mild to severe and (and there are also other types besides SLE). Don't stress over it but be thankful you have doctors that are paying attention!

wendya432
08-29-2012, 05:44 AM
Ashley, that is very interesting. 5 years ago I had my son, at term, after a few months of preterm labor that luckily responded to treatment. A few days after I had him I had to go back to the hospital and spent 2 days in ICU with what they called partial HELLP syndrome. Once they got my levels down and my swelling down they released me. I've never really been the same since, and I think that was the beginning of my lupus. Honestly though, it's been a slow process and only now looking back can see that that is when it all started. Lately I've been feeling pretty bad and have gotten worse very quickly, but it's been after a bad illness and some serious dental work.

Maybe if they can get things going now it can prevent you getting bad symptoms. At least they are being proactive!!

Deemarie1223
08-29-2012, 08:29 AM
Hi Ashley, with him I did carry to pretty much full term (15days early). However, I've had 5 m/c, a late term m/c at 17wks, a stillborn at 22wks. I had 2 full rounds of infertility testing and it showed nothing. Docs threw around "lupus" for yrs but I had no symptoms...the losses were my only symptoms. After lots of blood work I was found to have antiphospholipid syndrome, it is the leading cause or recurrent loss and early delivery and strongly linked with lupus. I would ask to be tested for that. It usually effects the placenta and that causes the loss os premature delivery. Even my son who was full term had a small piece of his placenta starting to break away, I'm so glad I went into labor when I did!


I DO have a happy ending and some advice. I had some bloodwork done a few mos back and it showed my antiphos was active /high, so if I were to have gotten pregnant then I most likely would have lost the baby or had pre term delivery. If you do find you have this, keel up on how active it is in your body, when it's low, that's a great time to try to get pregnant. I also battled cervical cancer as well s my cervix has had a lot of procedures, I was told I couldn't get pregnant again. To my surprise, in June 2011 I found out I was pregnant and I was scared out of mt mind! But since we finally had answers, things went well. It was hard, but worth it. I took baby aspirin (ihave 2 other blood diseases as well), anti contractions meds, progesterone shots, lung boosters at 24 and 28wks, a stitch in my cervix and 27 wks of bed rest, 14 were in the hospital. But I gave birth at 36 wks (they took her early on purpose to prevent any placenta issues) by csection to a healthy 5lb8oz baby girl. Some of the stuff (progesterone shots) were done just as a precaution, not that I needed them but anyone with a hx of preterm or m/c can always use a lil more hormone to keep the baby cooking:) you may not need all that intervention, but I'd highly recommend going to a maternal fetal medicine doc and a reg OB.

Never, ever give up. I did, my husband didn't...he always said "we will have another baby, I just know it" and he was right! Miracles happen all the time, my children are proof! If you want another, go for it! Just be cautious about it. And like you, I never had symptoms (well outward symptoms) but when I was pregnant with my daughter the symptoms started to present themselves, and in 2 yrs I've crashed...hard. In my research I've learned that pregnancy can set off lupus symptoms and I think that's what happened to me. Your symptoms could show at anytime, just read your body and be aware, you are your advocate for you and any babies you have :) if your not comfortable, get a second opinion. I hope this post was somewhat helpful, if you ever need to talk feel free to msg me, and I know it's crazy but we are thinking about possibly having another. We just have to be more finically stable so I can go on bed rest and I'm waiting for my dx still. I wish you the best if luck with your growing family and pursuing further to manage your body and all it's uniqueness:)

Ashleybritton
08-29-2012, 07:04 PM
Is it at all possible that I don't have lupus? Or that it will never progress to lupus? I feel like I don't have any hope. I'm sorry that I'm such a Debbie downer, but I'm so sad about this.

Deemarie1223
08-29-2012, 07:31 PM
You can have a positive Ana and not have lupus, yes. You can have a neg one abpnd have lupus. I would def get tested for antiphos and get your prenatal records to see if your placenta had issues at delivery, but even if you have both, you may still not have lupus. It's a hard disease to dx. Most docs dx after a length of time w symptoms and blood work. But like my situation, I had blood work and the only symptom was the losses due to the antiphos, for almost 10 yrs (I think back now and remember little things tho) before I showed major outward symptoms. But whatever the outcome is, you do have hope, you can live a long, healthy life and raise your son, and with the right docs and care, expand your family. Honestly, it's ok to be sad, I don't like it either but you have be proactive on your care and figure out what is or isn't going on and take the next step. I would ask for a second opinion from another doc if I was you, to help calm your nerves, probably a rhuemy would be the best bet, that's just my opinion. hugs to you! And don't lose hope please! Hope is what's gotten me as far as I've gone. Good luck pursuing this and we are all here to help<3

Deemarie1223
08-29-2012, 07:33 PM
I just re read your first post, I'm glad your seeing a rhuemy, you will get more answers there:)

tgal
08-29-2012, 09:28 PM
One of the things about Lupus is that all of the things you mentioned could also be from something else. It is like that with all things lupus so to answer your question .. Yes, it is possible you don't have it and you won't know for sure until you see the rhuemy. He will do more testing and know what to look for so try not to stress. To answer your other question... Yes, some people have very mild forms of the disease so, once again, try not to worry about it. Go to the specialist and find something out for sure.