View Full Version : Newly Diagnosed After 13 Years!!!
Hi everyone. Iíve been a quiet member who has been reading posts for quite some time. Doctors had always told me I didnít meet enough of the criteria to be diagnosed with Lupus. So like many of you Iíve felt like Iíve been in that limbo zone not knowing if I have Lupus or not for 13 years. I finally was diagnosed with Lupus and the Antiphospholipid Syndrome (APS). Believe it or not, Iím finally relieved that the doctors will be open and honest about my conditions. I donít think doctors realize what they put patients through when they play the you donít meet enough of the criteria game.
My diagnosis came after I had my first baby. Fortunately, I was on Lovenox shots because of concerns of a previous DVT. I had been tested for the APS antibodies for 13 years, but the tests always came back negative. I developed the HELLP syndrome towards the end of my pregnancy. In fact none of the doctors realized it until I was already in labor. The HELLP syndrome is a clotting condition that is fatal to the mother and baby if the baby is not delivered immediately. It is also known to be caused by APS. After having my baby, I started having terrible headaches every day. I started to lose my balance and my eye sight was blurry. However, all my blood work would still come back normal. I found an expert in APS and the doctor sent my blood to a special lab that tested for extra APS antibodies that most labs do not check for. My blood came back slightly positive for two of the rare APS antibodies. They also did a spinal tap and sent the spinal fluid to this special lab. Believe it or not, I had a different APS antibody in my spinal fluid and finally the doctors agreed to diagnosis me after 13 years! Who would believe I would be so excited over a Lupus diagnosis.
I can understand the strange "enthusiasm", or excitement if you will, involved in finally being diagnosed with Lupus. I was diagnosed with SLE in 2004 after many years of odd, seemingly unrelated symptoms. I've had my share of people tell me it was all in my head, blah blah blah . . .
My experience of being diagnosed was quite different. As a man, Lupus is not something either my Dr., or myself even considered at first, even though my mother has SLE, and I had some very clear symptoms. But, as time went by, I started to believe that I was one of the 10-15% of the people with SLE who are men. I was right. I had to sell my business and go on full disability, which I am still on today. Many other things, marriage plans, friends, all disappeared. Such is life.
Anyway, I just wanted to welcome you to our site. I guess you have noticed we are a pretty laid back group here. This is really an amazing group of folks. I'll be sure to check out your blog. Please make yourself at home!
01-20-2009, 01:59 PM
welcome to the site. I want you to know that there are a lot of compassionate and knowledgeable people here that are always available.
I wish you a good day, and look forward to your contibution to the group.
share a sile today,
01-20-2009, 09:28 PM
Hello Bama and Welcome,
I read your post and blog and found it interesting. I've had Lupus for 27 years, diagnosed in my teens.
It appears that I am one of the lucky ones that got a Lupus diagnosis on my first doctor visit. My family doctor/Pediatrician suspected it and ran some blood tests. He brought me in 3 days later and told my Mom and I that I had tested positive for Lupus. I look back now and realize how fortunate I was, since that allowed for the right treatment immediately. I ended up having a very severe case and was referred to an Immunology Specialist at OHSU (Oregon Health & Science University), who is still my doctor today.
I can imagine how frustrating it would be to go for so many years without a definite diagnosis. It's completely understandable that you would feel the way you do when you've finally gotten a diagnosis after that many years.
I just wanted to share that I also ended up in HELLP syndrome after the birth of my second child. They stopped things just short of seizures and death and I spent 3 days in Intensive Care, a very very sick Mom. Pretty scary thing to endure. And the medication they give you afterwards, Magnesium Sulfate, is a horror in itself. Makes you feel like hell.
I noticed on your blog that you have a family member with Hashimoto's disease. My Dad has Hashimoto's, and from what I understand it's fairly rare. My Dad has seen a Thyroid Specialist for 10 years and they were able to shrink his tumor quite significantly.
Anyway, I wanted to thank you for sharing your story and send a friendly hello. I'm glad you joined the group.
01-21-2009, 01:26 PM
Just to say hello and welcome and glad you found us. I so understand what you mean about the 'diagnosis' im told one day i have one illness then a few weeks later told something else. Hope my day comes soon so i know for sure.
You take it easy and you'll find all the people here are lovely and very knowledgeable.
Thanks for the warm welcome everyone.
Hi Lori, do you have APS as well or just Lupus? Luckily I went into labor before the HELLP syndrome got serious enough to show life threatening symptoms. However, they wouldn't let me have the epidural - that was a shock, but natural child birth ending up not being quite as bad as I had expected. Even after discovering that I had the HELLP syndrome, my doctors didn't realize it was connected to APS and Lupus. I ran across that on the internet.
01-21-2009, 03:25 PM
Welcome to the site. I had to wait for 30 years before I finally got the medical community to listen to me. It nearly cost me my life before I got diagnosed. I am serious. I just turned 50 in December. The Rheumatologist that confirmed my diagnosis at the age of 36 told me that I have one of the most classic cases of Systemic Lupus Erythmetosis that he had seen in years. My Rheumatologist told me that he believes based on all that I told him on my family history that I have had Lupus since the age of about 5 to 7 years old. What makes me so upset is that this illness had to attack my heart muscle before they would even listen and test me for Lupus. I hope that the doctors are better now a days then they were back then. I have been on medications since 1996. I also had a seizure during my labor with my son and Pre-eclampsia and gestational diabetes with both of my pregnancies and 2 miscarriages. I am glad that you finally got diagnosed. Hope that you keep posting. We all care for and about you.