I'm a 27 yr old, mother of four, who really needs some advice right now. I'm not asking for anyone to say 'Oh, you definately have lupus', lol! Just for some opinions on whether it's likely, and what to do about it.
Sorry about the long post that's about to follow, but I'd like to put down as much info as I can. Thanks in advance for taking the time to read/reply to this.
Wow, this is hard knowing where to start. I dont want to seem like a hypochondriac (and really, that's how I feel), but I want to include everything that may be relevent.
I've always been a 'lazy' person, so to speak. That is, I always want to do things, but hardly ever get around to doing them. However, over the last 6/7 yrs this has been turning from 'can't really be bothered' to just plain 'I cant'. Some days I wake up thinking I'm ready for anything and then 'Bam!', the tiredness hits me. Other days (rarely now) I will have so much energy that I can do anything (and often do as my mood tends to be quite ecstatic on those days!). However, the majority of days tend to be 'I should do soandso but I'm too tired', and on those days I have to really push/motivate myself into doing whatever has to be done.
About 5/6 yrs ago, I was diagnosed with petit mal epilepsy. I was stopping mid-sentence, having small lost patches in time and huge panic attacks in public (to the point of which I had to leave the situation, even if that meant when the person was still talking to me!). The latter only happens every now and then when I'm in a situation that I dont feel comfortable with but feel like I'm trapped (ie. a new person talking to me, and I'm the only focus, although I can talk to other 'new' faces and be perfectly fine!). Anyway, I had an eeg and it didn't show up much, but I was put on meds. They did seem to help, and even though I still had the panic attacks, everything else seemed ok, and like I said, the panic attacks have now become infrequent.
About 2 and a half yrs ago I became pregnant with my third child, and I went away and forgot to take my meds with me. When I got back I asked my gp whether it was ok to start taking the same dose again or to go up gradually and he said if I hadn't had any episodes, to try staying off the meds. Since then, nothing major has happened, so I've stayed off the meds.
About 5 1/2 yrs ago, I came out in a rash all over my body (but sparing my head and face). It was very itchy, and looked 'pin-prick' or hives. Went to the doc and he gave me cream for scabies. He still referred me to a dermatologist though as he said he didn't really think it was scabies but they had to check it. Anyway, by the time the app had come for the dermy, my gp had given me another dose for scabies, and some steroid cream. Went to dermy. He was really not nice. Told me to undress, took one look and said it was scabies! I said I'd done that treatment twice and he said I still had to do it again. Needless to say I didn't go back, and even after the third treatment the rash didn't go. Eventually, after several months it went by itself.
About four years ago I had chest xrays because I had had a persistant cough for quite a few months, and had horrific pain in my chest and shoulder. By the time that app came through, the cough had gone and the xray was fine. Gp said I prob had mild pleurisy from the coughing.
For the last few yrs I've had chest pains every now and then (just like now as I type this but it's quite mild at the mo) where I struggle to breath, and have to breath shallowly and wait for the pains to go. After one major time when the pains were so strong they were going down my arm, I decided to tell the gp. He checked my cholesterol, which was slightly high at 5.9 (I'm 27, semi-fit, but generally eat a varied/good diet-there's nothing I can cut out) so he put me on tablets to bring that down.
A few yrs ago I started to get rashes again. Mostly on my front and back. Sometimes they look like hive spots bunched together, other times they look like they are healing from the middle and spreading outwards (the most recent is in the middle of my chest, and started from an insect bite. The middle now looks clear with a red rash around it). However, on the same day, I also had an insect bite on my left arm, and although that was a little bit itchy, it never became a rash. I've had these rashes checked on about 3 or 4 different occasions for fungel infection, etc. but nothing has ever shown up.
About two and a half yrs ago, I also noticed a bald patch on the back-left of my scalp. Went to gp. He gave me cream. Grew back after some months. Then, again, start of this year, I had a 20p sized bald patch on the back right of my scalp. Went to gp again, he gave me some more cream. Instead of growing back though it is now the size of 2 50p's side by side, with another smaller bald patch underneath. Also, it seems whenever I feel there is regrowth there, it soon becomes smooth again as if it keeps falling out.
Over the last couple of yrs I've been getting cystitis every three to four months - again, ranging in severity- and each time there is nothing found/grown in the urine sample. I also get every few weeks what seems like the start of cystitis but doesn't develop into it.
Anyway, my gp a few months ago, decided to send bloods off for lupus (because of my hair) but they came back and he said they were fine. So, once again I decided to live with it (at this point I was having aches in my knees, and sometimes my ankles too. Gradually getting worse over the last couple of years) but then, about a month ago, I lost vision in the right hand side of my sight! It wasn't totally black, it was as if someone has turned the resolution right down on that side, and it was flickering/pulsing!!
Needless to say, I went to casualty. By the time I could get there and they saw me (about three hrs after it had happened) it was gone. They did a couple of tests for a stroke (looking at pupil reaction, gripping with hand, etc.) and found nothing so they sent me home telling me to see my gp on mon (this was sat) and to pursue lupus as it seemed viable. Sun night a little patch came back (again right-hand side of my vision, NOT my eye-ie. if I closed either eye the 'disturbance' was still there), but went again.
Changed gp on the mon (Really nice doc, and I felt really guilty leaving him but my eyesight was something really serious this time and I needed someone who'd take it seriously as he hasn't done any allergy checks on my rashes and keeps saying that the tiredness, aches and pains are down to me having four kids and nothing more- trust me, they aren't that much work. Lol!) and she got me an app for the stroke clinic for the tues.
Went there but he couldn't find anything. He also told me I shouldn't be on the meds for chlolesterol as it wasn't that high and could be managed by diet an exercise ( I haven't taken them since as my new doc hasn't got my notes yet so doesn't want to do a repeat pres until she knows all the details).
He did new bloods including glucose, esr, ana, and quite a few others and when they came back app everything was ok, just a little off, like ana (I think it was that one!) was 13 and they expect it to be 12, but nothing abnormal so he discharged me.
My new gp said even though bloods seem ok, she still wants me to have a ct (whatever the stroke doc says) because it was very unusual to have this happen to someone of my profile (age, etc.). Since it happened my eyesight has been a bit 'dirty' at times, but again this comes and goes, and is getting better. Then I started to get a headache (this was a week after the eye thing but I didn't mention it to my doc cos I thought it would go). Very strange, it's at the back left-hand side of my head and I can virtually pinpoint it's centre! It ranges from mild to very severe, and for the last few days has been worse first thing in the morning or last thing at night when I'm lying down trying to sleep! Told her when I'd had it for 2 weeks, and she said there's nothing she can do but ct should only take another couple of weeks, and she'd refer me to a rheumy just in case after the results of the ct scan come back. She asked for bloods to be repeated, which I did this fri gone.
Had a letter about ct scan and they are backed up for AT LEAST 14 weeks! I really cant wait 3 and a 1/2 months to find out whether my head is ok! So, I'm going to ask (when I get my blood results back end of next week) if there is anything I can do or whether I just have to put up with it.
Oh, and I had my youngest son 2wks 6days early, but because he wasn't 3 wks, they dont class him as prem. A couple of days before I had him, I had a pain in the lower left abdomen, and the day I had him I had a bleed but they did an ultrasound to see if he was ok and couldn't find anything wrong. I had him a few hours later that night! I still have that pain sometimes but very infrequently now (he's a yr old now).
And I have severe problems with my teeth (which my eldest son has too, despite only drinking water, and not eating sweets/sugar/etc. Honestly, people think I'm weird not giving my kids stuff like that but I didn't want their teeth to be like mine! Oh well!)
I'm not sure whether I have the malar rash because even though it is in the same shape, it's never scaly, raised, etc. and because my dad is prone to red cheeks, I figure I am too!
Oh, and I have a severe allergy to whatever is in hair dye! Wow! My scalp becomes inflamed and blistered, and weeps, and, well, trust me, it's not nice!
Last thing...I have some severe 'spooking' episodes on quite a frequent basis for quite a few years now, but they seem to be getting worse. They normally happen at night but recently have increased in frequency during the day too. Certain things can set me off (I dont watch any horror, not even doctor who now!), but more often I could be sat by myself quite happily, and suddenly I get this fear as if something is going to happen to me / someone's going to do something to me. It's totally irrational, and quite often leaves me paralyzed with fear if my other half isn't in the same room to 'protect' me. Sometimes (again quite often) it can happen when I'm trying to sleep at night and I literally hide under the covers.
I'm sure there are other things that I've forgotten for now but oh well!
Well, if you're still with me and haven't fallen asleep through all of that (and I really apologise with the timeline being confused/jumpy!), has anyone got any opinions for me?! Is it worth pursuing a lupus diagnosis, even if this third set of bloods come back ok? Or could it be several unrelated things and I'm just unlucky enough to get them all?
I worry that I'm making more of this than I should because I dont have VERY severe aches in my joints when I get the aches, My symptoms with virtually everything I've had have come and gone and ranged from mild to severe, and I dont seem to react to sunlight (although there has been little of that lately to test it on. LOL!), and two lots of bloods have already come back ok.
Anyway, I'll leave it at that essay, and if anyone has ANY comments or questions, please go ahead and reply. I'm open to anything! At this stage I just want to find out what's going on, and any help is appreciated so much.