Lupus

Curious, what made you go get checked for lupus? Did you have signs for it? My mom used to bug me a lot about getting checked because some things I have always experience..(but she bugs about a lot of things lol) and the fact that we have somebody in the family with it. But I'm not really too worried..

I guess I should add the things I have been experiencing for awhile..I'm not really good with going to the doctors so I haven't asked..though I'am due for a physical.

I do have the "butterfly" rash going over the bridge of my nose onto my cheeks..I've had that for as long as I can remember.Don't know if it's just a skin thing or something else. Nausea, fatigue..I feel tired no matter how much or how little sleep I get. I do bruise easily, mainly my legs. Chest pain, shortness of breath, chest pain is usually in the rib, or middle area, I did get a u/s for my palpations awhile ago and that looked fine. Headaches. Every now and than I get leg cramps so bad I end up at the doctors just to be safe since I'm on the pill but the only thing they tell me is low potassium. Sometimes I get faint but that comes and goes..who really wants to show up at the dr with all this stuff? They'd think I'm nuts. Lol. So I just blow it off and figure its normal. That's the gist of it. I'm pretty sure I'm healthy other wise. Have 2 kids, 1 c-section w/ blood transfusions and 1 vbac. Thanks.

Oh I forgot to add that when I eat really sweet thinks..like cake or too much candy, my face usually gets cold and tingly? Idk if that matters.

Edited 10/13/2009 4:16 pm ET by ashly744

Greetings and Welcome ashly744

I think, I can say I never went to the doctor to check specially for lupus. My signs were fleeting until the last one.  Basically she (my doctor) had been treating symptoms.  Which, even now, with a dx (diagnoses) of lupus and many of it's attendant phenomena and syndromes, the rheumatologist does too. (treat and/or prevent symptoms#. 

Ashley, if you have lupus or some other auto immune disease, it usually takes a while for it to be diagnosed and you will need to change your habits and get use to going to doctors and taking medicine.

Find out if that red rash is rosecea or a butterfly rash. Your doctor, after a battery of blood tests, may send you to a rheumatologist or other specialist. Don't hesitate to change doctors if you feel they are not taking you seriously. I didn't at first and suffered for it.

 Start a journal of symptoms. Put as much info in the journal as possible. What is the symptom, when did it start, how long did it last, what were you doing when it first occurred, does that activity brings on the same result frequently, etc. Take it to the doctor.  The more info you bring into the picture, the abler you and your professional medical team members will be to make feasible suggestions  Too often we do not remember certain things when we are actually in the doctor's office.

The journal or blog is also a very good way to keep track of how a medicine may or may not be affecting one even in the slightest way. Lupus medications work over time.  Often 6 to 12 weeks pass before something even begins to have any effect.   Your rheumatologist use of medication in lupus I think of as more of an art, what works in one body may not in another.  The correct dosages and combinations are constantly fine tuned, which is why noting in your journal can be so important.

You  also need to make a list of current medications including any OTC #over the counter), vitamins and supplements. List the mg, how often you use it in 24 hrs and the prescribing doctor. Be sure to list the OTC things.  I use a computer database program so I can easily make changes and have enough copies for my doctors and one for my purse.

If you haven't you also may want to start to build health files. http://messageboards.ivillage.com/iv-bhlupus/?msg=3229.2

In some areas copy of doctor's note etc. are available with your not having to pay if they are requested the day of service but you have to fill out a form.  See how the office staff does it- if you should provide a stamped self-addressed envelope or if they prefer to use their own. If there is a fee is required I just keep notes and use the 5 W's (Who, What, When, Where, Why and How if it's necessary) and a 1-10 pain scale with 10 being the most severe pain and 1 being the least). 
   Also make sure the rheumy is sending needed information to your Primary Care Doctor (PCD sometimes called PCP) since he/she will most likely be the head of your medical team.  You're not going to go to your rheumy for allergies or colds.  But you will need to check with your rheumy about flu and pneumonia shots to be given by your PCP.

Something your body is doing is worrying you. Don't play it off!  Many of us have had physicians who thought we were complaining about nothing. Sometimes for closure we went back to them and said 'I wasn't nuts-something is wrong-I've been diagnosed with lupus.' 

While it is true just because a blood relative has a illness does not mean that you may have one also, but your mother is correct about your needing to be checked out  There is no one test that identifies lupus,  Your doctor must run a group of tests, interpret that data as well as taking into consideration your current and past personal medical history.

I've no idea about your reaction to sweets but you should but it into your journal or the blog you print and take to the doctor.

Finding out about an autoimmune disease is a slow painstaking process, if you need some place to vent, vent long and loud-we do- just be sure your vent doesn't violate TOS- http://www.ivillage.com/about/0,,qr4p,00.html

Check out the lupus website:
http://cl-miladyknight-ivil.tripod.com/

You're invited to “Leave Your Mark" on the LUPUS HOME PAGES Guest Map!

http://cl-miladyknight-ivil.tripod.com/id2.html

Be sure to reserve your free newsletter for the next mailing.
http://cl-miladyknight-ivil.tripod.com/id4.html

Thank you for letting us know more about you through your profile.

If something is unclear or you have other questions just ask. We help one another. If we don't have an answer, someone may know where to find it. 

Read about lupus: Systemic Lupus Erythematosus
http://pain.health.ivillage.com/fibromyalgiapaindisorders/systemiclupuserythematosus.cfm

Lupus Quiz:  http://quiz.ivillage.com/health/tests/whlupus.htm

Lupus: Overview & Information on SLE - iVillage
http://health.ivillage.com/autoimmune/aulupus/topics/0,,4tqv-p,00.html

The 'health team' of a person with lupus is very important. The makeup of the "team" changes but some members stay the same-your PCP, Rheumatologist, Ophthalmologist,  often a mental health professional. ( Lupus and chronic illness depression are common and chronic.)  It's not unusual for your rheumatologist to advise certain specialists.   One needs to see an ophthalmologist-usually taking a visual field test- before and at regular intervals if Plaquenil is prescribed. (It can build toxicity and effect vision.) I think one should see an ophthalmologist NOT optometrist. 

Lupus is a disease that you need to read about.  The urls in this post will get you started:
http://www.lupus.org/newsite/index.html
http://www.4woman.gov/faq/lupus.htm#11
http://www.uklupus.co.uk/

miladyknight /Donna

          LUPUS

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Hi Ashley,

I am very sorry that I did not get to this post earlier.  With a chronic disease some days worse than others. :-(

When you have a question about your health, you are not worrying unnecessarily or seeming silly.  As women we have a heck of lot on our plates, you need to be satisfied that you have a clean bill of health, if for no other reason to see your child grow and not from an unexpected sick bed.

What did the doctor say was the problem?  Even if you did not take the list I hope you listed your other symptoms for him.  A well informed decision can not be made without information.

As you can probably tell from the length of the first post, this is something dear to my heart. I lollygaged around when I got my dx (instead of taking the immediate steps recommend by my rheumy) one morning I was a business professional and by afternoon I was in the hospital. I was too out of it to even rejoice that my thesis had been accepted.

miladyknight /Donna

          LUPUS

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