Monday, July 20, 2009

A Very Long Road to Diagnosis

I was diagnosed with lupus in September of 2008, however I was sick way before that. Just before my 16th birthday in July of 2004, I was diagnosed with a condition called endometriosis via a surgical procedure called a laparoscopy. This condition had caused me severe abdominal and pelvic pain for a couple years and I was very happy to get the diagnosis. I was put on medications for it and they worked for a while. Unfortunately, the pain came back a couple years later and I had another laparoscopy in January of 2008. Since this last procedure I have had very few problems with the endometriosis and I do not consider it to be a real problem with my health anymore.

I can remember getting migraines as a very small child. As I grew up, the migraines seemed to lessen until October of 2007 when they came back with a vengence. I spent five days in the hospital that month on IV steroids to try to break the migraine. I was then tried on various preventetive medicines. Nothing really seemed to work and I needed steroids, IV Toradol and IV compazine almost every few weeks in order to get a few days of normalcy. I had been seeing a neurologist before this because I had a problem with a blood clot in my spinal column after a spinal tap for viral meningitis a few years earlier and a bout with something that looked a lot like Guillain-Barre syndrome the year before. My neurologist was perplexed on how to treat me and we tried various preventetive medicines for a while.

In May of 2008 I started realizing that I would get a painful rash every time I went out in the sun. I did not know what was going on. A few weeks after the rash started, the fingers on my left hand started to swell up and then my right hand and feet followed next. I also started to get very weak and tired when I went out into the sun. I made an appointment with my doctor and they ran some blood tests for rheumatoid arthritis and also tested my ANA and did a complete blood count. I was told by phone that the rheumatoid factor and ANA were negative and that everything seemed fine so I should just drink more water in the sun. I tried this, but was still getting sick, so I went back but had to see another doctor. She told me that the CBC was not completely normal and informed me I might have lymphoma or another blood cancer. Needless to say I was shocked.

I did not believe this was the case. I told her about my joint problems and my (extensive) medical history and she said I should see a rheumatologist. I hoped this doctor would get to the bottom of everything. However it would be months before I could see one. I started my 3rd year of college in incredible amounts of pain, unable to tolerate the sun, with sores in my mouth, the rims of my eyes and in my scalp and feeling pretty awful in general. I called the rheumatologist I was supposed to see and pleaded with them to take me sooner. And they did. After hearing my symptoms, the doctor told me he was pretty confident it was lupus. They did blood tests and the were...normal. I was so confused. But he was positive that it was lupus and started me on Plaquenil.

The Plaquenil and my stomach were constantly at odds and I was in terrible pain and still getting sores, so he switched me to Imuran and put me on an NSAID. Around this time I decided I had enough of the school I was at and transferred to another school 100 miles away from home. I started with a new primary doctor and rheumatologist. My ANA tested positive after I saw the new rheumatologist (the only time since then). My sed rate and C reactive protein, red blood cells and some other blood tests came back strange after that also, so I officially got the 710.0 diagnosis of SLE.

This really is a brief overview of what I went through. I have been hospitalized many times since the age of 14, told I was a hypochondriac, and was completely miserable for a long time. Getting the diagnosis, while scary, also proved to myself that I was not crazy. At this point, I don't care about proving anyone else wrong. I knew for years something was going on in my body and now I know what.

1 comment:

Jennifer said...

This is scary, your history sounds so much like mine. I was diagnosed with endometriosis at 17 and never responded to any treatment (surgery, lupron, danocrine, birth control pills, provera, etc.). I had to have a hysterectomy at 21. I developed migraines at 18. In 2004, I was diagnosed with a lupus-like autoimmune disorder. In 2006, I was diagnosed with fibromyalgia and costochondritis after a bout of autoimmune pleurisy. I spent a couple of years on prednisone, which resulted in a complete remission of the lupus thing. My fibro is also now under control. My advice is be very upfront with your doctors about how you are doing. You aren't wasting their time, you are paying for their help. If you don't get the help you need, get a new doctor. Talk to other lupies in your area and find out how they like their doctors, then switch docs if you need to. Get plenty of rest and take care of yourself. I've discovered that I need mild exercise every day to combat the stiffness, soothe my arthritis, and to keep my mood up. I also have to eat healthy because too much sugar makes me tired. Experiment, find out what life adjustments help you.
*big hug* Jennifer