Recently Diagnosed with SLE

I have recently been diagnosed with SLE... but by saying 'recently' I dont mean to say it was such a short or immediate diagnosis.

I have heaps of questions and concerns but I will start with some background information first.

Since I was a kid I have had joint pain, as a kid I was told 'growing pains'.  I have always been anemic, had low blood pressure and was particularly suseptable to lung infections.  I would go through regular bouts of dizziness and progressively worse balance problems, especially walking through a hall or something like it, with a tendency to veer to the left. These were all pre-baby symptoms.

Then in 2005 I had my daughter... the most awesome little person on the planet.

Complications started from day one.  about two months into the pregnancy I developed a rash on my face... which wavered in intensity but pretty much was always there right through the pregnancy.  I gained a bit of weight early on... but after three months or so I started loosing weight dramatically while my belly grew rapidly.  I lost over 10 kilos really fast.  Then before my first ultrasound was due I had a massive bleed and thought I had lost my baby.  I was devistated.  But, a little while later we discovered I hadnt with an ultrasound... but... also discovered a uterine tumour.  At this point it was apparently 13cm.  Sounds big huh? Just wait...

The pregnancy progressed and other than some joint pain and creeking knees along with severe weight loss and facial rash it all seemed fine.  It was like I had twins though, I was so big.  The next ultrasound... a month later... showed that the tumour had grown... from 13 cm to 23cm.  As the pregnancy progressed the tumour got larger and larger.  at the last ultrasound it was messured at 30cm+, being so large it was unable to be accurately messured.  A caesar was scheduled for me, as it was obvious I would not be able to deliver her myself.  Not only that... the placenta was attached to the tumour and my daughter was tucked in between the tumour and my ribs.  She was so squashed by it her head was completely mis-shappen.  The ultrasound was booked for March 13th, two-three weeks earlier than her due date.... but it didnt last that long.  A week after the date was booked I went into labour.  about two and a half months premie.  My little darling was born only one kilo in weight :) So tiny.

Anyway... the caesar was an emergency and very difficult.  I had not known I was in labour as the contractions were not what I had expected, they werent at all painful.  I was 8cm dialated when I got to hospital! LOL

It took them a long time to get my daughter out... and such a long time passed that I lost a lot of blood.  A transfusion was ordered for me but never came.  The next day the nurse went to get my up out of bed to walk around and I was so excited to finally see my daughter for the first time.  I was really light headed, the nurse got me up, I took two steps and got to the wheelchair and just as I went to sit down, I blacked out.  I woke up on the floor, barely able to breathe.  I had had multiple P.E.s and spent the next three days in ICU and a week more in hospital before I couldnt bare it anymore, I wanted to leave so I signed wavers etc and was sent on my wway.

After about a week the tumour ruptured and I started haemorrhaging fiercely.  In less than two months I had had more than eight blood transfusions.... by the end of the two months I was having a transfusion every second day.  The public system did nothing and so I went to a private doctor, who immediately scheduled an emergency historectomy.  The tumour by this stage had completely taken over my uterus and nothing could be saved. 

Since then I have had terrible fatigue at times... an almost constant fogginess that I am more surprised when I dont have it then when I do... terrible joint pain which is only ever getting worse... facial rash... sun sensitivity.... chest pains... changing vision... and some strange 'head' problems, such as memory loss/difficulties, occasional speach difficulties which mainly involves stuttering and mixing up letters... for example I may say F instead of B, asthough it were meant to be.  I also experience what feels like having those 'sparklers' in my head.  I have terrible restless legs.... not only affecting my legs but also my arms.  Incredible nerve sensitivity that can drive me nuts, combined with violent twitching.  This happens when I am tired or fatigued.

The other thing is muscle weakness and twitching/ticking.  I will wake up with no strength and it will cause terrible fatigue during the day to the point I can not lift my daughter to the change table, I completely have the will, but no possible strength in me at all. 

OK... I have had all the blood tests and regularly have more... I tested positive to ANA but not the blood clotting ones... Im not sure what exactly I have tested possitive toward.  My inflamation markers have all always been through the roof since my pregnancy... and only one has dropped two points since being on plaquenil.  After seeing specialist etc they have diagnosed me with SLE... but sometimes I wonder... is it really? Do all my symptoms correspond?  I never have joint swelling or deformities, I get swelling but it isnt like the swelling of other arthritis sufferers... it seems more like water retention lol.  I wake up with more pain and stiffness in the morning but have more fatigue by the evening.

Does anyone experience anything like it? Do you have any advice for me?  I need help!

Thanks guys :)

Ari

P.S. My daughter servived to be born thanks to that tumour.  Her placenta was attached to the tumour and had it not been there to act like a filter, she may have been affected by the blood clots that I had in my pelvic region.  Miracles do happen everyday :) Its a wonder, with everything that happened, that she and I survived.  I was given the opportunity to 'terminate' after they realised just how many complications there were, including enlarged bloodvessels in my daughters brain.  There was a very big chance neither of us would survive and if my daughter did survive that she would have severe developmental problems.  But I would never ever had taken that option. 

My daughter is not only perfectly healthy and as strong as an ox... but incredibly beautiful and intelligent.

We are so very lucky and I am the proudest mum on the planet.

I've been writing all over the place, thought I should try to organise it a bit better LOL I am just so excited for answers.

Im coming up into another this time very serious flare... so Im getting stuck into the research so tomorrow I will go to my doctor armed with info.

These are my symptoms... the majority commencing during pregnancy or afterward;

- Headaches, feeling of sparks in my head

- Hairloss, everytime I am stressed or sick I lose lots of hair

- Fever usually combined or causes tummy pain or tummy upset.  Its brought on by quick temperature change, sun, sunburn or overheating or quick chilling from heating (walking from aircon to the hot sun or vice versa). Sometimes I get fever all by its lonesome.

- Joint pain.  Worse over night and in the morning and my hands for example get worse with typing.  I dont have joint specific swelling or deformity.

- Swelling or water retention.

- Short term memory loss.  But this isnt wondering where I left the keys kind of short term memory loss, its like a switch is flicked in my brain and suddenly I forget what I am saying, doing or where Im going. 

I have very little memory if any at all of what happened the previous day.  Sometimes when I am feeling my most clear, I will remember the previous days events.  When Im having a flare I will for no reason, replace letters.  Not mix letters up, but totally replace them with others without any knowledge or intention to, that is as I am talking.  When I get like this I will also suffer confusion and terrible fog.

- Unexplained bruises as mentioned.

- Stomach cramps, very painful and usually when I eat in the morning.  Weetbix especially sets it off.

- Anemia.  Im also allergic to ferrus metals which makes taking iron supplements impossible.

- Light headedness/dizziness and a kind of lack of co-ordination.  I will completely and unwittingly judge things to be in a different spot to where they actually are and completely innocently walk into them.

- Fatigue.

- Nausea.

- Facial rash, brought on by sun most commonly, or stress.

- twitching and weird nerve signals.  Mostly when I am tired or fatigued.  This gets really bad during a flare and combined with terrible joint pain makes sleeping nearly impossible.

- Low blood pressure.

- Weightloss for no obvious reason.

- dry eyes and mouth.

Diagnostic

- Always high protien in my urine.

- Always extremely high CRP and high ESR (I dont know what this means, I just know for the last year all my CRP results have been classified in the extremely high danger range yet the doctors seemed blaze about it).

- ANA that is most commonly positive for what ever ANA makes you positive for but is sometimes negative for it as well.

- Positive for another one, anti-DNA I think.

- Negative for all others, or borderline so not of concern.

- I had one of the lab techs tell me once that I tested positive for APS but doctors have apparently ruled that out.

- Slightly low thyroid.

If anyone could make sense of this for me, give me some advice on what to ask my doctors about... that would help me enormously.

Ari

good thing i have a great gp though. 

the docs seem to pass off a lot of my symptoms and not worry about them.  i think cause i look healthy.

at the moment i just had surgery to remove my wisdom tooth... im in a lot of pain cause it was just under local :( and there were complications.  so i have a flare plus a painful mouth.  not cool.

thank you so much for the warm welcome and you have given me some good points to consider.

Ari