Sitck With My Instincts??

Hi all -

i am having a lot of different issues that could be indicative of lupus (possible scle?) or another ai disorder, and just wanted to run some of it by those of you who have also been suffering, and/or diagnosed. Obviously, I am not looking for a "diagnosis" on this forum, but sometimes after leaving my fp doc, I feel frustrated and think it would be easier to ignore my symptoms rather than continuing to see him about them and coming out feeling like a hypochodriac! Don't worry, I have committed to taking care of myself and not ignoring things, but I thought maybe you all could offer some guidance as to whether I should continue to be vigilant and push the docs, or whether just watching things for a while might be in order. Any feedback would be appreciated if you can get through my post! Sorry it's going to be long.

I'm 36 y/o and to the world, I appear to be in great health overall. However, I am truly feeling terrible on an almost daily basis. My history - I have endometriosis, that was dx around 27. Maybe no relation to an ai problem, but 2 yrs ago I had pre-cancerous colon polyps detected & removed (no family hx - gastro was surprised); last year I had endometrial polyps removed. Around age 32, I began to experience bowel changes...Mom has ibs, and my symptoms are similar - pain, alternating constipation / diarrhea. Gastro attributed most to diet (which I have improved) and age (which was not nice to hear! At the time was only 34!).

Other history includes itp (idiopathic thrombocytopenia purpura) 12 years ago that quickly resolved with prednisone after being tested for everything under the sun incl leukemia, lupus, hiv, hep c, etc. Around same time, had an auto accident that resulted in lower back disc injury (relevant later) that turned into degenerative disc disease (ddd) dx after bad flare at 29 after the birth of my daughter. Also began to have problems with my knees - episodes of pain and at times they "give out" under me; continues to worsen. Sed rate and mri all normal then.

*over the past year, or year & a half, I have begun having what I refer to as flares of pain - back, knees, very stiff neck, overall muscle pain, tmj, multiple mouth ulcers, some shooting pains in wrists, etc. This is always accompanied by extreme fatigue, malaise, sometimes a very low grade fever and lack of appetite, and lasts anywhere from 1 to 4 weeks at a time, then I will feel okay for 1-3 wks (but not what I think I would feel like at 100%) before it "hits" again. Sometimes the episodes differ slightly and there may be abdominal pains, bloating and nausea. I managed to ignore most of this a the beginning, b/c I was going through the colon polyp situation and then the endometrial polyps; but it has all become more regular and recurring over the last 8 months or so.

In february, I experienced a new pain in my upper left abdomen that was worse when lying down and with that, I had a sharp pain on my left side when breathing in deeply. Wasn't established w/a fp doc at tha time, so called my obgyn for guidance; he sent me to er for chest x-ray afraid I had pneumonia (had a case of the sniffles - nothing major preceding). Chest x-ray was normal, but urine contained white blood cells, so er doc rx'd antibiotic. I assume bacteria was present, too, but she only mentioned wbc; I was asymptomatic for uti.

2 wks later, established with new family doc since pain was not subsiding. He felt it reasonable at that point to order a ct scan of the abdomen -results were normal... Sent me on my way. After a couple more weeks, the ul quadrant pain and the breathing pain both subsided on their own. Looking back, I wonder if it could have been pleurisy? Would that have shown up on an x-ray or ct or both? Neither?

Next, in late april or early may, I had an episode with my usual symptoms when I noticed strange mottled appearance to the palms of my hands. Pads of the palm at base of thumbs were purple-looking, and this was the first sign of itp that i'd had 12 yrs ago. Other areas were reddish, just looking different than usual (didn't really look like pics of raynaud's I looked up, but who knows...?) feared itp and went to doc next day and saw a different one since mine was out for the week. He was concerned enough about all of my symptoms and the way I decribed them as flares coming and going, that he ordered several tests, though I am uncertain what all was done. I do know that the ana was among them and that, as well as cbc returned normal (incl platelets), and sed rate was borderline, but wnl. He was more specifically trying to rule out ibd, given my bowel and abd pain issues. That, too, was negative. He felt I should continue to watch things and check in as needed, since a rheum would rely on some of the same tests to begin evaluating me, and they were normal.

Since then, I have had on and off weeks, and have f/u w/my actual doc who isn't quite as concerned about the "flares" as the other doc seemed. He is very nice and I feel I have an okay rapport with him; just think he sees nothing I should be worried about since so many tests have been done recently and are normal - and I can hardly argue with the results of the tests. Therein lies my predicament; I feel something is not right, but tests say all is fine. (and believe me, I am thankful for that, but it is still frustrating; as many of you know more than me).

Most recently (and lastly!), I noticed small reddish-purple spots on my mid back beside my spine...They look like petechiea, but don't know if they actually are. Assumingly unrelated, I also developed 3 "ring" lesions at different areas on my torso and, given their appearance, I began treating them with an otc anti-fungal assuming ringworm - ick! After 1 1/2 weeks, no improvement; went to doc who visually dx ringworm and prescribed another anti-fungal. A few days after that visit to the doc, I noticed small red, slightly raised spots on both breasts that were asymptomatic and looked completely different from the supposed ringworm. Doc had me come in 1 wk after those began to appear; he didn't know what it was, but noted it was different from others and thought maybe it was just dry skin...Told me to use otc hydrocortisone and call him if no improvement w/in a couple days. 5 days later - no improvement, and I had 3 times as many spots. The older ones by then were changing, got a bit larger and a slight scale appeared on top. As they continued to change, they did begin to appear a little bit like the original ring-shaped lesions. Called doc back who admitted he was stumped and he prescribed a combination anti-fungal / steroid cream. I am only at the 3 day point with that med, but so far no real improvement, though the earlier ones seem to now be a little lighter in color than the new ones that continue to pop up. The first ring lesions got larger at about the 3 week point and have remained unchanged...Still there. The spots / rings are now all over my chest, breasts, belly, mid-lower back, sides, and armpits, with some on my neck, face and one or two on upper thighs.

It concerns me b/c it does look like some pics of the lesions assoc w/ subacute cutaneous le; but of course, it may just be something viral or fungal also (though strange no response to 3 different anti-fungals or hydrocortisone). I wouldn't be so concerned if I didn't have anything else going on; but then again, ana was negative, so maybe I shouldn't be thinking of lupus at all...? Has anyone here had anything similar to any of this?! Should I continue to be vigilant checking in with doc considering the things I am experiencing? Wouldn't it be reasonable to expect my rash to be scraped or biopsied at this point since the doc isn't sure what it is?

Other transient "symptoms" of interest include heart palpitations (i have had these here and there since I was about 20...Was significantly worse when I was on the course of prednisone for itp). These leave me breathless and are always scary, but they only last 10 seconds or so. I have 3-5 headaches per week with at least 1-2 migraines monthly. I often have mouth ulcers and these usually accompany my episodes. When I was put to sleep for the endo polyp removal, I had 10 or so in my mouth when I woke up that lasted for more than 2 weeks afterward. These could have been due to trauma from the breathing tube insertion, etc., but I didn't have any other signs of something like that not going smoothly. I have had several urinalysis' that have contained wbc's &/or protein; another last week. I've had visual changes; and just feel my brain isn't "clear" sometimes. I am in sales and have to learn technical data that has always come easily to me. In recent months, i've felt my acumin for that has diminished...Though I haven't admitted that to anyone. I also feel a lack of motivation at times because it's just so tiring to do all I have to do, so it may just be attributed to that. I've never had the malar rash, but have always been sun-sensitive, and now I am beginning to see red spots (that stay) on my nose and forehead in-between eyebrows, with a few on cheeks under my eyes. I assume these are not anything to do with a malar rash...But how does one get the malar rash? Does it come and stay? Or is it temporary and recurring?

Okay, I think that about covers it, and again, I am sorry for the length of the post. You all know lupus is a "full picture" disease, so I felt I needed to mention all the things i've experienced in order to get my full picture across.

Any feedback or insight would be greatly appreciated!! Truly2