Lupus Forum - Waiting For a Diagnosis

For the past two years, i've been sick on and off with strange symptoms. It started out with waking up one day as if I had taken some strong decongestant or antihistamine. I felt kind of foggy headed or slightly drunk. My mind just wouldn't clear. Soon I felt weak all over. Days later I could hardly walk. I could only stand for about five minutes; then i'd have to sit down and rest. I got very light sensitive. And would actually feel weaker in a bright, sunny place. This all hit me in the summer, and the time of day I would feel best was at night or if during the day, in our basement. I had trouble emptying my bladder, weak voice, trouble swallowing, and numbness in my arms, fingertips, and some of my toes.

A neurologist diagnosed me as having transverse myelitis. He put me on strong steroids. An mri showed some "spots" on my brain. Spinal taps were all normal. Ana taken from spinal fluid also normal. Well, I was sure I was headed down the path to multiple sclerosis. But the neurologist said the spots weren't in the place they should be for ms. A year passed and I slowly healed. I could walk long periods and even run again (i never thought I would).

I've had repeat mris of the brain. Each time, the spots are there and the mri techs say they look like "vasculitis" and the neurologist says, "ms would be the last thing he'd think it is." a few times per year, i'll have one of these flares where my symptoms return (but never as bad as that first time). Still enough so that i'm pretty tired. A few times they've been bad enough where I get a fever and body aches, also headaches. But that usually passes after a couple of days.

Sometimes my eyes bother me a great deal. They just hurt and I see lightning flashes every day. I've seen an opthalmologist who says he can't see anything wrong.

I also have strange irregular heartbeats. My cardiologist said, "pvcs" and nothing to worry about. Unknown cause.

Now, my earlier history: preeclampsia with two out of three pregnancies. Sensitivity to the sun (i break out in a rash that usually clears up after I get out of the sun.) though, if that body part is repeatedly exposed (like my arm that's on the driver's window side) the rash stays and kind of itches and is bumpy.

The neurologist is trying to get at the bottom of the brain spots. He did some tests including one that detects inflammation and a rheumatoid factor. Both came back positive. Wouldn't all this be enough to point at sle? And yet I still don't have a diagnosis.

What do you think?

Tallwoman