View Full Version : My symptoms
07-20-2008, 04:33 PM
I would like to get some input from you all on my symptoms. The reason we are currently looking at lupus is because during my pregnancy I had a placental abruption and infarction without any of the usual risk factors. My ob/gyn wants me to get tested this week (6 weeks post partum) to see if I have lupus or any blood clotting disorders.
Here are my symptoms.
Migraines with Aura (vision disturbances, numbness, speech confusion)
Regular headaches, rarely, but had a doozy of one last week
Rash - have one now, it's on my face, neck, abdomen and arms. It's driving me nuts!
I would say fatigue but that could be due to a number of things over the past 6 years - going to school and working full time, then working two jobs, getting pregnant, and now sleepless nights!!
A few years ago I went to a dr. thinking I had lupus because at the time I had experienced the most awful chest pain one morning (along with symptoms above) and really painful knees after doing some cleaning out of our garage (I was 25 and pretty fit at the time and didn't think this was normal) She kind of blew me off stating it's hard to diagnose and so she didn't really think it was worth doing blood work but would if I wanted to - I didn't want to be combative and so I didn't do it.
Anyways, I go in for my check up this Thursday and that is when he will order the blood work. Any suggestions?
Have any of you had pregnancy complications due to lupus?
07-20-2008, 04:40 PM
This past week, painful feet. Helps to have shoes on, but hurts otherwise.
07-20-2008, 05:03 PM
Welcome to the site. I am pretty new to the site and it is a great site. I have SLE Lupus and have had it for most of my life. I will post in here the criteria that they look for when evaluating a person to see if they have Lupus. You have to have at least 4 of the criteria to be diagnosed with Lupus. I hope this helps. You can copy them and print them out and take the list with you to the doctor. Put a note by the ones that you have ok. Well here is the list:
Classification criteria for systemic lupus erythematosus:1
Butterfly (malar) rash on cheeks
Rash on face, arms, neck, torso (discoid rash)
Skin rashes that result from exposure to sunlight or ultraviolet light (photosensitivity)
Mouth or nasal sores (ulcers), usually painless
Joint swelling, stiffness, pain involving 2 or more joints (arthritis)
Inflammation of the membranes surrounding the lungs (pleuritis) or heart (pericarditis)
Abnormalities in urine (test results show increased protein in the urine or clumps of red blood cells or kidney cells, called cell casts, in the urine)
Nervous system problems, such as seizures or psychosis, without known cause
Problems with the blood, such as reduced numbers of red blood cells (anemia), platelets, or white blood cells
Positive antinuclear antibody (ANA) test
Laboratory tests indicating increased autoimmune activity
Initial diagnosis and disease monitoring
If you have physical signs of lupus and a positive ANA test result, further testing may not be necessary. If your doctor feels that further testing is necessary to clarify your diagnosis, you may have one or more of the following tests:
Other antibody blood tests
Erythrocyte sedimentation rate (ESR, or sed rate) or C-reactive protein (CRP)
Complete blood count (CBC)
I hope that this helps. There will be others that will post as well.
07-20-2008, 05:09 PM
Hi Mrsnuef and welcome -
Congratulations on your new baby!! I have had three miscarriages in my life and two children. I had a major illness with my second, and they suspected lupus at the time but ruled it out. It was after this, however, that I began getting the really bad symptoms. Nine years later, I have an official diagnosis.
Lupus is very hard to diagnose, and most people wait at least a couple of years before being officially diagnosed. There are 11 criteria that are used to diagnose lupus. Patients with 4 are thought to have lupus. However, there is no one test, or one specific symptom that can give a diagnosis.
From what you have written, you have SOME of the symptoms...the coagulation problem with your pregnancy (which could also be antiphospholid syndrome), headaches , Raynauds, etc. But you do not technically have 4 of the 11. There is a sticky post at the top of the forum that lists the 11 criteria.
Unfortunately, the diagnostic process for lupus is HORRIBLE. You are lucky your doctor is testing you now. If, by chance, it is NOT lupus, that doesnt mean it cant be in the future. Most of us here were told we DID NOT have lupus at least once in our past!!
I hope your tests go well, and keep us posted on how your test results come back, OK?
Enjoy that new baby!!!
07-20-2008, 05:13 PM
Im sorry - I forgot you had a rash as well. This is a hallmark sign of lupus, so your chance of lupus is greater than I orginally said.
Like I said , however, it is a difficult Dx to make - so be persistant!!
07-20-2008, 05:51 PM
Thank you all for posting!
I don't know if I have the butterfly rash as well, what I have looks nothing like the pictures I see on the internet. I have a very light pink on the top of my cheeks (under my eyes) on both sides of my nose. It does have the right shape it's just not very dark.
Does anyone have the butterfly rash but it's not too apparent?
07-21-2008, 02:14 AM
The doctor would have to decide if it is truly a malar rash, but the rash does not have to be dark red. Mime was more of a brownish red and raised. It was ugly. I am wondering if you have any dry mouth or dry eyes and things like that going on. They should also test you for Sjogrens Syndrome. The rash on your face may also be a Rosacea Rash. I am wondering is all. Sjogrens is also an auto-immune disorder. A lot of your symptoms sound like Sjogrens at this time. I have both Sjogrens and Lupus. I hope that you get some answers at your next check up.
07-21-2008, 09:31 AM
I would like to add to the great information our sisters had said...4 of the 11 can be accumulative over years, not all at once. Keep a journal of your symptoms, degree, triggers and etc to help with a speedy diagnose.
Also the malar rash...currently mine is light pink, like a slight sunburn...times it has been flaming red. Most of the pictures online that I have seen are the worst degrees of it and mine has never been like that. Prior mine use to come and go, at first thinking I was allergic to lotions and cosmetics...then while is a doozie of a flare it decided to stay..ugh.
A common difference between rosacea and the malar is rosacea involves the areas of the outside of the nostrils and the folds between the nose and the outer part of the lips. Whereas the malar does not go into the sides of the nostrils or down the fold between the nose and the outer part of the lips. These areas are always spared and look white in contrast to the red..pink rash of the cheeks and bridge of the nose.
A positive ANA doesn't mean Lupus, nor does a negative mean not. 3 - 5% of the people can have a negative ANA and still have Lupus. Lupus is a great mimicker of other diseases, so they should rule out others before diagnosing...
Keep looking for your wellness.
07-21-2008, 12:58 PM
Hey Oh, so what would you call a dark pink flakey strip on both sides of nose? Where the side of the nose ends and the cheeks begin? Doesn't itch, does sting a little if I rub to hard. Just curious, my cheeks and top of nose are light pink too. Looks a little funny with my medium skin tone.
07-21-2008, 01:26 PM
Sounds like the malar because the pink to red tone doesn't have to be evenly distributed over the cheeks, nose and face and it doesn't have to be itchy. But the rash can be on the chin, forehead from my reads and snaps I have seen...
It stings because it is irrtiated skin. I handle mine with TLC and it has returned the kindness by staying pink
From my experience...it can be smooth, rough, spot bumps, dry, chaffing....varies in degrees of pink and red and can or can not itch.
I find the descriptions online varies from place to place. Some say smooth, some say no itching....
They can do a biopsy of the facial skin, but that is a bit of a harsh procedure for the face. They punch a section out, not scrap. I've had that done twice on my legs, didn't hurt ..but I am sure on the face it will.
The last I had done on my shin is still a red purple large pea size circle.
If you think it maybe rosacea it is important to receive treatment for it..from my reads they use topical or oral antibiotics...
So, how goes life?
07-21-2008, 07:05 PM
Hey Oh, my son had a skin-biopsy years ago. I think they might sting on the face too. I always wondered if it was a malar rash or rosacea, but also noticed photo's on-line were so red. Its light, but right in the crease along nose so dark pink. Docs never said anything, so I figured it was just a pink tint that my skin just developed over the years. Figured nothing important, just chalked it up to getting older. There is a pink tint along jaw line too.