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maybe/maybe not

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Old 08-25-2007, 08:00 AM   #1
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maybe/maybe not

Hey all.

Well, next week my doctor is testing for lupus. And I'm almost scared it'll come up negative. I know that sounds nuts and I sincerly hope no one takes offence to it. It's just I'm in pain and no matter what tests the doctor has done so far, he can't figure out what is wrong with me.

For a very long time I've had weakness in my leg and arm, my wrists have always given me pain and I've just felt exhusted. I was tested for everything from thyroid problems and cealiacs to glandular fever, all came up negative.

Then after some more tests he found I had low magnesium, low ferritin (which I knew about anyway), low calcium and low vitamin D. Also my inflammatory response was a high reading, and there were keytones in my urine sample.

In the last two weeks I've just gotten worse. So much so I can barely get out of bed. The pain in my muscles and joints is excrutiating. I take ibuprophen with codeine to try and relieve the pain, but it only works fo a very short period of time. My muscles hurt so bad that even sitting on the toilet makes me wince. Night time is the worst. I don't have a fever, yet I get the chills so bad. I shake and shiver even tho my body feels warm to the touch and during those moments the pain in my joints is intense. I'm in tears most nights now. I get tingling a lot too, and muscle twitches. And my eyes feel like they're burning. When I'm not having chills at night I'm getting cold sweats so bad I have to get up and change my nightgown, twice last night. I highly doubt its menopause, at least I hope not! I'm only 30.

I know I'm having a bit of a pity party, but I'm just so tired of this. Even my jaw and head hurt, sharp shooting pains mostly. I'm not able to eat as much as usual and my energy level has hit the lowest i can remember it being.

One of the doctors I've seen has said it's all in my head. I KNOW with all my being that this is not in my head. I don't want to feel this way. I want to feel healthy. I think because I've had depression they've given me the 'hypochondriac' label.

I've heard it mentioned that people with lupus can have a sensitivity to sulphur. The last antibiotics I was on for a UTI were sulphur based and I broke out in an itchy rash all over my body.

Like I said at the start, I kinda hope it comes up positive, not because I want lupus, but I'm tired of not knowing whats causing all this. Everytime I get a negative test I'm convinced the doctor thinks I'm faking this. I can't stress how much I'm not faking.

I'm sorry for rambling. I'm just exhusted, which is also strange because I'm sleeping most the day these days. I've been lucky enough to have my mother come help me with my daughter. I just wish I knew what this was. I'm just plain over it...

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Old 08-25-2007, 07:15 PM   #2
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Re: maybe/maybe not

Dear MissPoss, Welcome. And good luck with those tests; I hope you get clarity & help from them. Have you done some reading? Obviously, none of us can Dx ourselves, but I found I asked better questions and was driven to switch drs., once I realized what *wasn't* being done.

For starters, have you read the 3 "sticky posts" (permanent posts) at the top of the thread list? And, in your country, looked for anything by Dr. Graham Hughes (U.K.-based)? Or maybe you have the U.S. hardcovers available, e.g., by Dr. Daniel Wallace or Dr. Robert Lahita? And there are probably some Australian publications that I just don't know about...

There are so many pitfalls in getting answers & help. I experienced the usual stereotyping, as I typically looked much better than I felt; so I also heard the "head case" routine more than a few times. Also, my drs. stopped at the ANA test, instead of ordering more specific ones as well (ds-DNA, anti-Ro, anti-La, etc.) Also, the dermies who did my skin punches also stopped short: should have done immunofluorescent stain tests, but didn't. I finally went to a teaching hospital rheumatologist & was also referred out to a dermatopathologist. Finally, after years of flailing---bingo!

Just some random thoughts... I can really understand how frustrating, painful & tiring it gets. Post again when you're in the mood, OK? Meanwhile, best wishes, from Vee

Old 08-25-2007, 07:27 PM   #3
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Re: maybe/maybe not

Dear MissPoss I read through your post and I am so sorry for your pain. I think alot of people on this web site can relate to the "all in your head" answer. If you get a chance, why don't you do some research on Fibromyalgia. You have many of the symptoms. The thing with the fibro is they have to rule out alot of other diseases because there really isn't a concrete test for the fibro. Find a web site for the fibro and check out the trigger points. See if this applies to you.

Just a thought

Keep posting when able
God Bless

Old 08-26-2007, 07:26 AM   #4
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Re: maybe/maybe not

MissPoss, Was half asleep earlier! I should have included in my 1st post:

*Symptoms* are important, yes---but that the "4 of 11" criteria in that one of the "sticky posts" is the standard way of diagnosing & classifying lupus. The trouble with symptoms is that many overlap onto other diseases & conditions. And some of the "4 of 11" do that, too, alas. Only a few of THOSE scream out LUPUS & ONLY LUPUS, e.g., anti-ds-DNA, anti-Sm, and any rash PROVEN by biopsy/tests to be LUPUS-SPECIFIC.

Thus you need a rheumatologist who both calls for all the right tests AND takes a very thorough lifelong medical history. Note that you do NOT have to meet the criteria simulataneously: they can even occur one at a time. Think of a criterion being off in indelible ink, for the right mental picture.

Bye & best wishes, from Vee

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