I am new here and so far undiagnosed. I am just feeling my way in this surreal medical world. This is going to be a long post so if someone can bear with me long enough to give some advice it would be much appreciated.
First, some history...I was diagnosed in 2004 with severe ITP (platelet level was 5). I was treated with prednisone for 2 years plus a bit before this returned to normal. Increasingly over the years since then I have been feeling just unwell and fatigued. I would have days here and there where I would feel what I called 'dropsy'. (this has nothing to do with the medical condition by this name, it's just that my arms and legs would lose strength and 'drop' and it was the only way I could describe it to my husband!) This has been happening more and more frequently and got to the point where my husband would pester me about going to get checked out. I just passed it off as tiredness (I have had 4 children in the last 8 years and that can make a person tired - surely all mums felt like this!!) About 4 years ago I had a weird thing happen with my eyes, one pupil would dilate while the other stayed normal. I had to keep my eyes closed till it passed, sometimes this was up to ten minutes but it would happen pretty much every day. I went to the optometrist and he said there was nothing wrong with my eye but he could see that the blood flow was restricted and to go to a GP (busy mum never did). When I was pregnant with my last I started getting weird adrenaline rush attacks out of the blue, my heart would thump I would go all sweaty and faint. My OB put me on beta blockers because "things like this happen when your pregnant". My baby is 16 months old and I came off the beta blockers but it is still happening though not as bad as it used to.
Last November...We moved house. It was one of those rushed moves 'all in a day style' on a Friday. The following Monday I had this terrible pain down below. I thought I had pulled a pelvic floor muscle during the move. I could barely walk, the pain was extreme on the right side. After a day and a half of this the pain subsided and settled as a dull pain in my groin on the same side. Never another thought until the Friday of the same week I woke at 5am from a deep sleep feeling like I was going to vomit. I rushed to the toilet and sat there for 5 minutes waiting for it to happen but nothing and after half an hour it subsided to just a strong nausea feeling (which I still have 10 months later). I went to the GP because it was a bit unusual. He suggested grumbling appendicitis, if it doesn't settle down in three days come back. In three days there was no difference so went back but had to see a different GP at the same practice. She immediately did blood and urine tests which showed up a UTI somewhere (but I had no UTI symptoms - no burning or difficulty urinating etc) and 1+ protein. She put me on a course of antibiotics which did nothing. She next checked my thyroid etc and everything was fine except a slightly elevated parathyroid with no obvious cause.
Over the months I have had blood test after blood test and urine test after urine test, mostly showing nothing significant. The UTI has disappeared but the protein has been intermittently absent or trace over about 6 tests (including a 24 hour collection). There has also been a consistently low WCC and Neutrophil count. The pain has evolved, still in the groin but spreading upwards up my right side to just at the base of my rib cage (usually just a dull achy pain) and in the last two months I have been getting terrible stabbing attack pain in my right rib cage sort of behind my right breast ( so bad I can barely breath when it hits). With all of this the fatigue has got worse, some days I cannot get out of my chair I am too weak. Baby brain from the last baby has not gone away like it should have, I cannot be relied on to remember anything (brain fog?) I have developed a slight stutter and am always getting my words mixed up. I get times where I am dizzy and 'jet lagged' and feel like I'm going to faint. I have a bumpy hives rash that comes just below my elbows. It used to come on my knees but it gradually changed in to elbows (?). Each time it comes it is slightly bigger than the last time and it comes every couple of months lasting about 3 weeks. I get swollen hands at night, sometimes when I get up in the morning I can barely move them.
I had my appendix out in April in the hopes that it would magically fix my pain issue. No luck. I have since been tested for all sorts of things (coeliac, crohn's, UC, allergies, etc) everything is coming back normal. Two weeks ago I had all the tests done for lupus. Everything came back negative or normal except for the ANA which was positive at 1:80 speckled. The doctor ruled out lupus based on the fact that it was too low and there were no other blood manifestations. I had a gastroscopy done this past weekend which showed duodenitis with no obvious cause.
I am not entirely convinced!!
I know this an extremely long post but I wanted to get thoughts from people who have lupus to know whether to accept the doctors decision and look into other things or to go back and push this point. Does it sound like lupus or not???