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Hi I'm Tracy and I have had one heck of a week!
Just a little background, when I was trying to fall pregnant with my second child (5 years after the first - who was a surprise) my husband and I had all sorts of troubles, I kept on suffering early miscarriages, until finally just shy of 14 months later we fell pregnant with my son. During this pregnancy they noted early on that I had a blood clot in the placenta plus very high BP. I was immediately sent to the high risk clinic where I was placed under the care of a team of docs including a nephrologist, who placed me on bp meds and aspirin. He tested for an antibody called anticardiolipin for which I am sure you girls are familiar. This ab is often associated with lupus. My doctor at this time never talked further about the ab he just kept me on asprin up until 36 weeks. After giving birth to my son we quickly fell pregnant (as no doctor would issue bc we thought is took us forever to fall preg with ds we would use nfp lol!), I was only 14 weeks PP Anyway during this pregnancy I was again high risk but this time under the care of another nephrologist. No more test were conducted with regard to the ACL. Though this time in the PP period I was given clexane injections.
I only this week had follow up with my nephrologist, and this appointment took a rather interesting twist. She wanted to start from scratch, doing a complete physical, and history. Whilst doing the physical she asked me loads of questions that I thought at the time were of no real significance.
Was I aware of ACL which of course I said yes
Have I suffered any rashes and for what duration, and what did they look like - well I was like yeah, infact I just had a rather annoying one that covered my arms, neck, cheeks and it lasted 2 weeks. I generally get similar rashes either on my inner forearms, thigh, stomach or face rather regularly, every 6-8 weeks sometimes they are just patches of dry skin, or they are similar to hives (v itchy)
Do I have any swollen joints - I was like well I was meaning to talk to my doc ages ago about my elbow it is constantly swollen, aches from time to time but kind of never got around to it
Do I have an tender joints - I was yeah but I don't think its anything, I had just been through a period of a couple of months where the heal bones were so tender that they hurt to touch, but I was just thinking hey I am pregnant these things happen
She also took a very keen interest in my fingers - I really don't know what she was looking at
She also asked about photosensitivity and do I get rashes from the sun, I really couldn't anser that, but having had the time to think about it, I really think I do. I have found it really uncomfortable to be out in the bright light for years now, once upon a time I would sit out there no problems, but now I will avoid hanging out the washing midday because it is too bright - would you consider this photosensitivity??? Also about the rash thing, I am always getting them but I always assumed it was from sensitivity to the salt water, or pool water, or the area that I was walking through?? I usually find these rashed sting rather than itch, is this part of photosensitivity, should I tell her those things???
She also noted that I had a heart murmur which has only developed over the last few years, I was in the defence force and this was never something that was noted, and they do check for them, so it has clearly developed only in recent years.
I have protein in my urine
Plus when they this the original tests for the ACL there were 2 other things that have come back in my blood work that she seemed concerned about.
My doctor mentioned I have auto immune markers - and I believe she is of the opinion that I may have lupus.
She has sent for for stacks of test inluding all of the Anti nuclear tests, ENRs??? gosh there are 3 pages of them. Also she has referred me to a cardiologist for an echocardiogram as she believes that one of the valves in my heart are sloppy. I also have just had a renal angiogram to check my arteries and kidneys for coiling and calcium I think.
Anyway I have done a bit of research regarding Lupus - which is the disease in question and it seems like I basically fit everyone of the criteria. Even the heart murmur and high bp + protein can be a symptom!
Whilst reading the signs I also noted other symptoms that she hadn't asked about, a few years ago I suffered hair loss to the point of needing to see a dermatologist - he did bloods and found I was quite aneamic (I am constantly) and put it down to that.
Also I suffered and infection in my sternum - basically when I took a breath if felt like I was being stabbed in the chest
I have also been sent to a cardiologist because I was complaining of feeling tired all of the time and felt out of breath when exerting myself only mildly ie walking stairs.
I had also suffered a case of meningitis - which my doctor is aware of (which I believe can trigger the onset of lupus)
I guess where I am going with this is could it just be coincidence??? I know lupus is made up of a series of symptoms and some blood markers - which I definitely have the ACL and 2 others which I don't know what they were but I believe they were relevant to an auto immune disease. I just can't comprehend this diagnoses - I don't feel sick, I feel broken sometimes IYKWIM but I always seem to get better! And as for the butterfly rash which is meant to be a big symptom I don't know if I have that, this may sound silly but I have noticed in recent year or so that I have a flushed appearance accross my cheeks and up to my temples but it isn't what I would call a rash like the pics of the malar rash, its really more of a permanent blush evident even with makeup, is this typical of the malar rash???? I am was thinking if I didn't have a proper malar rash then it can't possibly be lupus, dunno if I am praying for a miracle Anyway I believe some of you girls have lupus, how does this sounds to you, could I be ok or is it not looking promising???
Thanks in advance
Welcome to our lil' group I'm Nichole,I have two kid's...Emily 5 and Ryan 2. I have Multiple Sclerosis and Ulcerative Colitis.
Auto Immune diseases are alike in the sense they all seem to have a remission period and a "flare" period. Some days you may feel really really good...like nothing is wrong and then maybe the next you feel like a 100 ton truck hit you. After I was dx with UC,I thought I was going to die...and then I had my first remission. Then I thought I was cured. No one explained to me properly that I would be like this...in and out of remission for the rest of my life. Sad,but true
There are a couple of other women that frequant this forum,that do have Lupus. I'm xsure they can answer question better pertaining to it. Sorry...I wish I had more info for you.
Anyhow...I'm glad you joined us! Stick around,we would love to have you!!! :-)
__________________ Nichole,Mommy to Emily and Ryan
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