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Old 06-16-2005, 05:51 PM   #1
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aspen05 HB User
Questions about Lupus

I went in today to the my doctor to get the results of my test for possibly having Lupus. I had already had a preveous Possitive ANA of 1.80 so i had to go the the Rhuematoligyst. He said that i came back possitive for a component that says i have the ability to develope Lupus in the future. Now i have to go in every 6 months for blood test for the next few years to see if anything changes.
MY first question is, does this mean that i will for sure develope Lupus in my life time. If i do, can i live a normal life. I am 32 with 2 small children. I am SO depressed right now thinking that my life could change for the worse.
My doc. said i should stay out of the sun, does that mean he thinks i might develope it if i am in the sun.
I am Tired ALL the time, I wake up shaking at night sometimes and sweating, i thought it was just panic, but now i am scared that it could be worse.
I don't have a rash on or anything, But I'm afraid that would mean that i would have Lupus SLE. I have read that this is the worst one to have because it attacks your organs.
I do have alot of joint pain, the bottoms of my feet hurt alot, thought it was just from my shoes. I have confusion sometimes, i mean where i just draw a long blank. I have also been diagnosed with Intersistial Cystitis, could that be related to Lupus as well. I know that IC is an autoaumune of the bladder.
Please, someone give me facts or experianced answers to my questions, i am pretty depressed right now I don't know anyone personally who has Lupus so i can't really get my questions answered unless i go online and get the worse case.
Thank you

Last edited by aspen05; 06-16-2005 at 06:22 PM.

 
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Old 06-17-2005, 06:30 AM   #2
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Re: Questions about Lupus

aspen, I can tell you that a positive ana does not mean you will develop lupus. my doctor tells me a lot of people have a positive ana and never get sick,if you do have symptoms of lupus they can be very mild,as are mine. after i found i had a very high ana(at a routine physcial,the doctor ordered the test because i complained of being tired all the time) i had no other symptoms of lupus for years and the doctor told me it was possible i would never have lupus. I did later develop joint pain (that is relieved with 800 mg. ibuprofen) later mouh sores ,the butterfly rash so the doctor said it was probably mild lupus and probably would never get any worse. They do the blood test to make sure it isn't affecting your organs and in most people it never does. what i did was begin to take good care of my self,think positive,eat lots of organic fruit and vegetables,drink filtered water,limit caffeine,exercise (as much as possible) when my feet hurt and i can't walk i do floor exercises,what ever i can do to keep my body moving . I have learned to delegate things to others(i used to think i had to do everything myself) but i don't. I have learned to take things slower enjoying little things like a long bubblebath,lighting candles,watching movies,reading etc.As you will see on the post lupus can be a very bad disease and for many it is,but there are many of us who only ever have very mild symptoms. I still do not understand the sun thing myself,as i have never had any reactions to the sun ,but just to be on the safe side i have limited the time i spend in it,not completely because it is one of the things that i enjoy so much. I hope this has been a little help to you. elizabeth

 
Old 06-17-2005, 10:53 AM   #3
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Re: Questions about Lupus

Dear Aspen05,

Welcome to you! As far as what your dr. told you, about having a "component" that means you *may* develop lupus, in your shoes I'd ask him WHAT component. There are some "sticky posts" at the front of this board describing the diagnostic criteria for lupus. And what a bizarre thing IT is---something that you need to match on 4 of 11 criteria over your LIFETIME.

There are only two autoantibodies on this list: anti-ds-DNA and anti-Sm. If either of these are present, then no one probably really needs to take the time to count any further---as they are very specific to lupus & only lupus. Other autoantibodies, in contrast, can appear in mulitple diseases, lupus being only one. This, alas, is also true for ANA, the threshold blood test---it's not specific to lupus & can in fact be positive simply due to a passing virus or to a familial tendency.

Honestly, I'd just ask, and I'd ask copies of your labwork, too. Then I'd post again & get more feedback from the group here on the specifics.

Sorry if this isn't as definitive as you'd like---but sometimes drs/ say things that are (1) poorly conveyed, (2) meant to soothe, but don't, or (3) flat-out wrong.

from Vee (told for years I did NOT have lupus, but, my luck, I did!) OH---forgot to say that I was evaluated for Interstitial Cystitis myself, I had so many bladder issues. Turns out probably NO to that. My symptoms cleared up rapidly once I was treated for lupus. Had LOTS of other things going on, too. Hoping to hear more from you soon!

 
Old 06-18-2005, 07:27 AM   #4
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aspen05 HB User
Re: Questions about Lupus

Dear VeeJ,
I thank you for your response. As far as the "Component", i'm not even sure what it meant I was kind of lost when my doc. was giving me my results, i just remember him saying that Yes You are possitive but it is not "Active Lupus"yet, i'm not even sure what that means either.
Before I was told all this, i didn't even know what Lupus was so I just kind of sat there as my results were read figuring that if I was in any kind of danger surley my doc. would let me know, but then when i got home i started reading up on it a little. I didn't even know that i had a right to ask to take my lab results. I am even pretty nieve when it comes to some of the abreviations or lab work abreviations that people post regarding thier results. If the doctor could have explained it to me in childlike terms, perhaps I would not feel so lost, But ofcorse I probably should have told him how confused i was at the time.
Now my next appointment isn't for 6 months. He said to keep an eye on things until then. But what am i supose to keep an eye on, i don't even know that.
Should i call my doc. office and ask if i can have my Lab results, or do i have to wait until my next appointment.
Every time i make an appointment i have a 30.00 co. pay, and we don't really have that kind of money, so i would hate to have to make an appointment just to get the results again, but i'm not really sure of my rights as a patiant. Can i just call and tell them i want to pick them up, or is that left up to each individual doc.
Thank you for listening
Aspen

Last edited by aspen05; 06-18-2005 at 07:42 AM.

 
Old 06-19-2005, 07:45 AM   #5
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Re: Questions about Lupus

Hi, Aspen. I do not think calling your dr. to ask for copies of bloodwork---or asking what this mysterious "component" is---should get you smacked with your co-pay! You should be charged your co-pay only when you physically show up for an formal appt.

Hope you get that call made & get lab copies---and then post again with a few more specifics. We've all had appts. like the one you had---where we walk out more confused than we were when we walked in. Leaving a dr.'s office, I once walked smack into a street sign & fell over & nearly knocked myself out. Police showed up (someone called them) to verify my status (dead? alive? in need of mental help?). Plus I had a goose bump for weeks.

So don't feel remiss about not getting more info while you were sitting there!

With my best wishes, Vee

 
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