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Old 03-02-2008, 11:14 AM   #1
Join Date: Mar 2008
Location: Louisville, KY, USA
Posts: 1
creativeone123 HB User
Please Help!

Ok, so I am indeed desperate for advice! I know I have autoimmune problems, but cannot get a definitive diagnosis outside of the IBD and I thought the Lupus board would have the most autoimmune knowledge between its users. My sister was recently diagnosed with Lupus, but hasn't acquired a large amount of knowledge yet.

For like the last four years or so, I've seen a steady decline in my health. I've had all of the following:
episcleritis (eye infection- twice)

mouth sores/ulcers

extreme fatigue - hits you like a brick wall kind of tired

two miscarriages in a row (both after having seen fetal heartbeat)

abnormal (but only slightly abnormal) thyroid panels - high & low!!!

terrible joint pain - ankles are AWFUL, finger joint paint, wrists and knees

major memory problems (I forgot what I was going to say here! - Seriously, my memory sucks)

and IBD

So I've been to a rheumotologist, a couple of years ago and I do not have RA. My internist has run the ANA on me twice and both were negative - a couple of years ago. And the last time I went to my doctor and asked him to please, please help me figure out what is wrong with me..... HE SAID, " I think it may be depression and/or anxiety." Yep! I said, " I really don't feel depressed, shouldn't I feel depressed if I'm in a deep depression?" Apparently not according to my doc. He really isn't a bad guy, but I am so incredibly frustrated. My husband thinks I've turned into a lazy slug and I just have no energy. I was a size 4/6 and now I'm pushing a 10/12 because I don't do anything and it hurts to even walk down the steps in the morning. I will take any advice you guys have to give. If you think I'm crazy and depressed, please say so. Just point me in some direction.

Thank you very much for any feedback! And sorry for any spelling errors, I didn't see a spell check.

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Old 03-02-2008, 07:11 PM   #2
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Join Date: Feb 2004
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Re: Please Help!

Creativeone, Hello & welcome. I'm only a patient but I had severe GI problems for 20+ years, plus a whole raft of other recurrent problems. I saw a lot of doctors & didn't get any relief until I finally took myself to a teaching hospital rheumatologist.

I finally started to realize that my GI problems had started to "team up" with other, new symptoms. Moving along, to what you call IBD: do you mean inflammatory bowel disease (like colitis or Crohn's), or irritable bowel disease (so-called functional, with no evidence of inflammation)? Are you on any meds for it? If so, is there any possibility that your problems evolved AFTER starting meds? (Certain drugs can induce a lupus-like syndrome called drug-induced lupus.)

About seeing rheumatologists... Have you read the "sticky post" with the ACR criteria for systemic lupus? You must meet 4 or more of the 11, not necessarily all at once, to be Dx'ed with systemic lupus (SLE). For some variant lesser forms, you may meet fewer than 4.

Also, the "sticky post" on antiphospholipid syndrome (APS) may be interesting, given your very difficult history of miscarriage. My heart goes out to you.

About ANA: it's positive in multiple diseases. My understanding is that it doesn't prove or disprove RA, as I think RA has its own complex diagnostic criteria, something like 4 of 6 things...? Also, ANA doesn't prove or disprove lupus, either. People are more often ANA-negative in some of the lupus variants; but also maybe 5% or so in classic systemic lupus (SLE).

I hope you post more after reading those stickies. If anything really jumps out at you, I think you should try another rheumie, to try to get *someone* to explain your chronic joint pain, etc. Bye for now, with best wishes, Vee

P.S. I ended up being Dx'ed with the SCLE form of lupus, an intermediate form in which ANA is negative maybe 30% of the time. My local drs. were cleulessly looking only for "classic" lupus, so I didn't do at all well with them. The teaching hospital rheumie had a LOT more expertise to bring to my case.

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