A quick background....
I have been feeling pretty awful for about the past year. Brain fog, numbness, tingling, weakness, headaches, dizzy spells, fatigue, anxiety, depression, pain in joints, swelling in the legs, worsened allergies, palpatations, difficulty breathing, vision problems, supposed psoriasis (that doesn't itch) and hair loss are just a few of the strange and random symptoms I've been feeling. My PCP has sent me to specialist after specialist, MRIs (possible MS), bloodwork, etc. The endo I saw for possible thyroid issues suggested Lupus.
I was wondering if anyone has a very mild butterfly rash, or a rash that isn't bright and obvious. I'm african american, and I have a dry, bumpy, darkened area across the bridge of my nose and my cheeks. I notice it because I know my own face, but it's not a glaring blatant rash. There have been times where it's very red and looks irritated, but it doesn't hurt or itch. Sound familiar to anyone?
Another issue is that I've never had blood pressure issues before, but recently it went from being well under 120/80 to 160/95, and had to be put on blood pressure meds. Can Lupus do that?
My final question is about red blood cells. My PCP took a CBC over the summer, and stated that I wasn't quite anemic, but that "microcytosis" was found. My red blood cells are much smaller than they should be. I know certain anemias are found in Lupus. Is this one of them?
I know I sound desperate, but I hate feeling like I do, without even a name to put to it.
I'm sorry this was so long!
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"No other road, no other way, NO DAY BUT TODAY!"
-RENT
Jonathan Larson
Hi. I'm just a patient (obviously). Anemia in lupus is very common. Dr. Wallace in his hardcover writes that 80% of people with lupus are anemic at some point. I couldn't find much on microcytosis, other than the most common cause if it is iron deficiency. Do you know what your iron levels are? (Not very helpful, sorry.)
Have you kept copies of your bloodwork? Can you see what autoimmune blood tests have been run? Like ANA, anti-ds-DNA, anti-SM, anti-Ro, anti-La, etc.? The "sticky post" about test results has a resource in it where you can go to read about these tests.
Blood pressure is elevated in 25 to 30% of people with SLE (again, per Dr. Wallace). Most common causes: kidney disease & steroid use. Does your GP run urinalysis regularly to check for protein in urine, etc.?
As for malar (ACLE) rashes, I only know what I've read (mine were torso & upper arms). One feature that's dististinguishing is sparing of the nasolabial folds (grooves running from sides of nose to outer lip). Does this ring any bells? Has a dermatologist ever seen it? Or a rheumatologist?
When I learned my GP suspected lupus, I drove straight to the library & took out hardcovers, one by Dr. Daniel Wallace & another by Dr. Robert Lahita. Reading helped me ask better questions.
I do understand your frustration. The awful thing is that in some people, conditions evolve slowly. The definition of SLE is very strict, per the "sticky post" at the top of the thread list. You must meet 4 (or more) of 11 criteria at some time, but not necessarily all at once. Have you seen those criteria?
Maybe most important of all: you mention seeing multiple specialists, but were any of them rheumatologists?
I hope you post again soon. Bye for now, with my best wishes. Sincerely, Vee
Thanks for the response VeeJ. I haven't seen a rhuemetologist yet. I see a derm in a few weeks. I had an ANA run the other day, but no results yet. I haven't had a urinalysis since my daughter was born, and that was a year and a half ago. I did have protein in my urine then....
I have at one point met at least 5 of the criteria...I will check out those books. Sounds like they were helpful to you.
__________________
"No other road, no other way, NO DAY BUT TODAY!"
-RENT
Jonathan Larson
Hi. I REALLY hope the dermie you're seeing takes a full LIFETIME medical history, which is essential in lupus & similar conditions. Your whole life matters, not just "the moment". Maybe you can prepare a chronological list in advance to take with you, incl. any test results you have, especially ones that had abnormal values?
I knew I'd found a sophisticated rheumie (thinking-wise, that is) when his staff asked me to fax, in advance of my appt., just such a lifetime history, in my own words. When preparing it, I tried to keep it to one page for readability. I divided it up into "early" (kept that brief) & "current" (provided more detail).
I also hope this dermie will consider himself/herself part of a TEAM of drs. with whom he/she should be communicating, backtracking, etc. You need a team player!
I hope you let us know how you're making out. Keep trying & hang in there, OK?! Sincerely, Vee
Butterfly rash and anemia 
