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lupus? - 11/3/2009 8:19:01 PM

dollparts85

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I've been having a lot of health problems the past two years or so and the doctors haven't really been able to find the cause. I just got a call from my rheumatologist's office today saying that several of my tests came back positive...one being for lupus. I know auto immune tests can have false positives and false negatives...and they're going to re-do the tests again to see if they've changed. I don't know exactly which tests showed what yet...I'm hoping he sends me a print out in the mail. I know my sed rate and CRP have been elevated and continuing to rise over the past year.

Symptoms:

-Pain in just about every body part. My skin feels bruised. My bones ache, especially in the cold. Joints swell.
-Bladder spasms
-IBS
-Treated for GI impaction
-Enlarged spleen.
-Blood and protein in urine.
-Painful urination without infection.
-Weakness
-Frequent falling and dropping things. Balance issues.
-Blurry vision that comes and goes. Lasts 3-4 hours at a time and I keep blinking to make my eyes focus but it only helps for maybe 2 seconds and things go blurry again.
-See stars and spots of grey that come and go.

I think that's most of them. Does anyone have lupus? What symptoms or test results did you have before you were given a diagnosis? Or anyone else have these symptoms/test results and get another diagnosis? I'm scared. I've known something was wrong for a long time...the pain is just getting so much worse lately. It keeps me awake b/c I can't get comfortable. :(

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RE: lupus? - 11/3/2009 8:21:33 PM

purepleasure

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quote:

ORIGINAL: dollparts85

I've been having a lot of health problems the past two years or so and the doctors haven't really been able to find the cause. I just got a call from my rheumatologist's office today saying that several of my tests came back positive...one being for lupus. I know auto immune tests can have false positives and false negatives...and they're going to re-do the tests again to see if they've changed. I don't know exactly which tests showed what yet...I'm hoping he sends me a print out in the mail. I know my sed rate and CRP have been elevated and continuing to rise over the past year.

<snip>

I think that's most of them. Does anyone have lupus? What symptoms or test results did you have before you were given a diagnosis? Or anyone else have these symptoms/test results and get another diagnosis? I'm scared. I've known something was wrong for a long time...the pain is just getting so much worse lately. It keeps me awake b/c I can't get comfortable. :(

go with what your doctor recommends. seriously.

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RE: lupus? - 11/3/2009 8:24:37 PM

dollparts85

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I will. I'm just looking for other people's experiences and support.

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RE: lupus? - 11/3/2009 8:29:44 PM

Kalista07

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RE: lupus? - 11/3/2009 8:29:48 PM

CalifChick

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And so it begins.

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RE: lupus? - 11/3/2009 9:25:11 PM

Rule

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It might be chronic fatigue syndrome.

Whatever it is, eat for ten days three or four litres of yoghurt only per day and with each litre of yoghurt take 1 milligramme of plain vitamin C. Afterward send me a cmail and report whether the diet alleviated your symptoms or not.

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RE: lupus? - 11/3/2009 9:46:27 PM

califsue

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Here is a link to WebMD that has some information regarding lupus.

http://lupus.webmd.com/guide/lupus-systemic-lupus-erythematosus-topic-overview

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RE: lupus - 11/3/2009 10:36:46 PM

Ebonybbw

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I have some of the same symptoms. I have been complaining of a pain in my leg to my PCP for 3 years now which has become increasingly worst. 2 years ago he sent me to a Rheumatologist because my Sed rate was high as well as my anti nuclear antibody. After 4 months I went to a second Rheumatologist for a second opinion because my rates were increasing instead of decreasing on Mobic. Both docs asked if there was a family history of Lupus. No, however my sister had an auto immune disease which included the imbalances, falls, weakness in her legs and eventually inability to walk.

After two years of taking Plaquenil 400 mg daily, shedding 50+ lbs, muscle relaxants and lots of tylenols, my sed rate is finally decreasing. We still don't know what "It" is. Lupus? Srojens? Fibromyalgia? My Rheumstologist feels the Plaquenil will stop it from presenting full blown or slow down the process. The leg pain visits me nightly. As soon as I lay down in bed I feel it coming. Hard to describe the pain. Kinda like deep muscle, toothache feeling pain. One that just lingers. Did I mention the hip and shoulder pain which causes restless nights due to constant repositioning.

I feel the leg pain and joint pains are different and maybe unrelated. Over the past couple of months I developed varicose veins on the back of my left leg behind knee-thigh area. The pain that originated in left leg at night I have in both legs every night. My PCP is having me to see a Neurologist. One other problem I have is numbness in my feet after sitting for prolonged periods of time, especially after driving for 45 mins or more.

The pain is so intense sometimes in my legs (while in bed) that I'm afraid one day I'm gonna get out of bed and not be able to walk.

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RE: lupus? - 11/4/2009 12:23:12 AM

sirsholly

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please ask your doctor.

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RE: lupus? - 11/4/2009 4:26:18 AM

zephyroftheNorth

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quote:

ORIGINAL: dollparts85

I will. I'm just looking for other people's experiences and support.

No, you are following your MO here and asking people to diagnose you. Then you will argue with what we say, all (I suspect) for attention. Forgive my cynicism but past experience with your threads tell me this is what will happen.

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RE: lupus? - 11/4/2009 4:56:50 AM

Ebonybbw

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Wow and I was genuinely being supportive. :(

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Post #: 11

RE: lupus? - 11/4/2009 5:27:18 AM

angelikaJ

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quote:

ORIGINAL: dollparts85

I just got a call from my rheumatologist's office today saying that several of my tests came back positive...one being for lupus.
Symptoms:

I'm scared.

Doll, I am going to answer this based on the above information.

Of course you are scared.
It is scary not to know what something is.

The good news is that likely now your rheumatologist has definitive proof that something is wrong.
There is not just one test for Lupus.
A positive test that indicates it might be Lupus may also indicate it could be something else.

Let your doctor do the sleuthing.
Stop obsessing and perhaps read a book by Jon Kabbat-Zin.
Don't just read the book.
Work through it.

Do something else and let your body de-stress.
If you haven't already, please ask your mental health provider(s) to give you techniques for managing your anxiety/obsession.
You are doing yourself no favors by spending hours looking up your symptoms.

Doing that is very stressful and stress will cause any symptom, especially pain, to be worse and feel worse... plus since you are looking at your symptoms with a microscope and it is basically all you can think of, you are in fact magnifying them.

< Message edited by angelikaJ -- 11/4/2009 5:39:48 AM >

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RE: lupus? - 11/4/2009 7:10:57 AM

purepleasure

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I <3 angelika

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RE: lupus? - 11/4/2009 7:23:46 AM

angelikaJ

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quote:

ORIGINAL: purepleasure

I <3 angelika

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30 fluffy points!

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RE: lupus? - 11/4/2009 8:30:29 AM

VirginPotty

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RE: lupus - 11/4/2009 9:07:25 AM

dollparts85

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Ebonybbw- That sounds a lot like what I have been experiencing. It's scary, isn't it? I hope your doctors are able to find the true cause and get a treatment that works. It's overwhelming to think that we may have to deal with this forever without even knowing what it truely is. *hugs tight*

angelikaJ- Thank you. I will look up that book and see about getting it. Hopefully it is available on paperbackswap. Do you mind if I PM you if I have trouble finding it? I have been doing progressive muscle relaxation and a bit of yoga to try and reduce my anxiety and tension. I think it helps some though I'm not sure. Can't hurt though, right?

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RE: lupus - 11/4/2009 9:20:02 AM

CalifChick

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You can always manage your anxiety by giving more blowjobs.

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RE: lupus - 11/4/2009 9:29:56 AM

dollparts85

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So true! Lots of fun and doesn't involve a whole lot of thinking. Gets my mind off things :) but my jaw hurts after. haha

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Post #: 18

RE: lupus - 11/5/2009 2:23:42 AM

sirsholly

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quote:

but my jaw hurts after

you're not going to start a thread about it, are you?

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RE: lupus - 11/5/2009 2:44:54 AM

zephyroftheNorth

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quote:

ORIGINAL: sirsholly

quote:

but my jaw hurts after
you're not going to start a thread about it, are you?

Probably

Hey, I have an infected cyst on my back, should I start a thread about that?

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