Wifeandmommy

I'll warn you now. This is a long post. I'm new to this all and just don't know what to do or think.

Over many years, I have seen my primary doctor for a variety of "little" things; depression, fluttering in feeling in my chest, confussion and memory issues (like not being able to remember common words or names of people I've known for years). Eventually, after having a day when my blood pressure was 90/40, I was seeing black when I stood up (even when I did so slowly) and my memory and confusion problems were starting to effect me more and more, I made another appointment with my doctor to go over everything in at once. I figured over the years, symptoms that I brought up one at a time may be connected and if I brought it all up at once it would be easier for the doctor to see something or be able to tell me they are unrelated.

I went to see my primary doctor, who I've seen for the last 8 or so years. I brought up the problems listed above as well as an eye issue I've had since I was a kid. My eyes roll up for a second or two and when they do, I can't change what I'm doing. I can think of something I want to say, but can't make myself talk or if I'm walking down the stairs, I just keep taking the same sized steps.

I have had problems with shortness of breath whether I'm exerting myself or not (and I am not overweight) and there are times that my legs itch so much that I just want to cut them off, even when they are not dry (inflammation perhaps?) And before I started taking anti-inflammatory meds, I would complain of pain throughout my body on a regular basis. I also mentioned to my primary doc that since high school I've been able to feel my abdominal aortic pulse (and can actually see it sometimes through my clothing), which I've read that CAN be normal, but a nurse that I used to work with told me I should have it checked out just in case.

He told me he wanted to run some blood tests, have me go for an MRI and and EEG. When I came back after all the tests were done, he said the MRI was good, but it did show some "thinning of the brain." He said, "That's normal with age... just not really YOUR age." I'm 29. He also said that the EEG showed some slowing. The test that really made him move forward was my ANA Titer IFA/Pattern and ANA Screen EIA. I was told I had Mild Lupus SLE and was referred to a Rheumatologist for polyarthritis and possible lupus.

The rheumatologist asked me some questions and I was nervous and felt like I was answering wrong. Even though I know it's not a right or wrong thing. He ran some blood and urine tests and when I finally called them two weeks later to have them faxed to me saw that there were abnormal results. The results had already been done for almost two weeks. A week later, after calling 2x's a day, the doctor finally called me back and told me that my labs suggested Lupus but his clinical finding didn't so he I didn't need to be treated for anything. He said I didn't have any findings of inflamation... I'm on an anti-inflammatory arthritis medication (which he knew about).

Anyway, here are the results that from my research seem to point to lupus as well as some symptoms. I'm considering seeking a second opinion. Any thoughts?

ANA Titer IFA: >=1:1280
ANA Pattern: Diffuse (Homogeneous)
ANA Screen EIA: Positive
Anti dsDNA: 133.9 (60.0-199.9 = Positive)

Extremely dry, itchy, gritty feeling eyes. Constant feeling of dry mouth. (Rheumy suggested lubricating eye drops and to chew sugar free gum when I got to bed... and keep it in my mouth while I sleep - which technically has helped). He suggested Sjogren's syndrom but my labs were negative for those types of antibodies.

Urinalysis:
Bilirubin: Negative - Confirmed by Ictotest (I thought this seemed like a good thing, but it was highlighted by the lab as abnormal)
Ketones Urine: 15 (1+) mg/dL
Leukocyte Esterase: Trace
WBC Urine: 0-5/hpf
Squamous Epithellal: Many
Bacteria: Few
Mucus: Present

I do have a light blush across my cheeks and nose that never seems to go away. I also have what still looks like tanned skin on my back from a moderate sun burn from early June. My wife thinks it looks like I've been scarred by the sunburn. I'm constantly tired, have a hard time falling asleep if I don't take 3mg of Melatonin (that my primary dr suggested) and even when I sleep, I either wake frequently or wake up knowing that I didn't sleep well. I am also allergic to sulpha drugs, which I've read many Lupus patients are as well. I still have a lot of confusion. I read in another post of a woman who says she frustrates her husband because she says things like "Could you hand me the thingy that does that thing over there on that thing?" That is me!! I want to go to Law school, but even though the sample questions for the LSAT look simple to me, I fear I won't be able to concentrate enough to answer them. My hands get so cold just walking through a store that I have to have my gloves on because they hurt.

I apologize again for writing so much, but I'm so frustrated. I feel like the rheumatologist (who said, when I asked how many people have a positive anti dsDNA don't have Lupus, "Not many. Not many." and who said that I shouldn't be treated for lupus but told me to be careful of the sun because people with Lupus tend to have problems with sun exposure) just doesn't want to have to do the follow-ups that a lupus patient can require. It already takes 6 months to get in when you're new and 8 months for a follow-up with this doctor. When I asked the rheumy about the ketones he said it was just because I hadn't eaten (I had a doughnut for breakfast and the test was at 11:30am). He continued that the billirubin is part of a natural process (though I've read it's not supposed to make it to the urine. He also told me in the appointment that my joint pain was normal and everyone has it (I told him that sometimes it feels like someone is trying to pry off my kneecap with a tire iron. Is that really normal for everyone??) Oh, and I forgot to mention... at the beginning of the rheumy appt, he was reading my primary doctor's dictation. He read that I was being treated for Lupus. He said, "Lupus. Could be, but we'll just see." Which seemed a little pretentious to me.

I've read a lot of people's posts and teared up because I could understand what they are saying and their frustrations. Maybe my post will make someone else feel like they aren't alone.