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Old 01-12-2009, 05:34 PM   #1
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ScottishLass HB User
Unhappy Desperate

I am in despair. My GP and Supposed Specialists are refusing to diagnose Lupus due to only having a slightly positive ANA.
I am currently 32, I have been having problems with my health since 2003, and still without diagnosis. I suffer severe joint pain, migraines, discoid lessions on my arms face and basically anywhere else they feel like popping up. Fatigue seems to be my whole life. I can sleep for 40+ hours and still wake up tired. I have depression, recently I have been losing my balance at times, at other times my hands twitch and won't do what I want them to do. I have high levels of blood and protein in my urine sample, but no infection. I have a long history of migraines and joint pain requiring treatment since I was 15.
I have been told by one Dr that it was Depression
I was told by another that I had Staph? tests did not show this however.
I have eventually been told that I have a CTD.

Due to not having any exact diagnosis I am not receiving any treatment. What else do I have to do?

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Old 01-13-2009, 03:48 PM   #2
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Re: Desperate

ScottishLass, hi. From what I've read (three well-known authors follow) & was told by my own doctors, you do NOT have to have a positive ANA, let alone a HIGHLY positive, to have SOME form of lupus. That's because there are subsets of lupus. Here's a sketch of the main ones.

In full-blown systemic lupus (SLE), odds of having positive ANA are very high, maybe 95% of so. Even so, a small group of people have "Ro-lupus", in which they meet 4 or more of the standard criteria, yet their ANA stays negative. It's believed that a particular autoantibody, anti-Ro, "masks" the ANA in this small group. The rash most associated with SLE is the malar "butterfly".

In an intermediate group called subacute cutaneous lupus erythematosus (SCLE), people may meet more than 4, or less than 4, criteria. Only about 2/3 have a positive ANA; and about 2/3 are positive for the anti-Ro antibody. There are two distinct rashes: psoriasiform (looks like psoriasis but isn't) and annular (papules that eventually evolve into targetlike circles). SCLE rashes generally do NOT scar or depigment. In SCLE, the entire range of problems seen in SLE is possibe, but the odds of the worst (kidney & CNS) are thought to be considerably lower than in SLE.

In DLE (discoid lupus)---the mildest group---people meet fewer than 4 criteria. Only about 50% have a positive ANA, often low-positive; and specific autoantibodies are not found often. Discoid lesions do tend to scar &/or depigment. In addition to skin lesions, fatigue & joint pain are common.

Do your rashes scar or depigment? If they don't, I'd wonder if they could be SCLE rashes, rather than discoids. But obviously I'm ONLY a patient... My own local doctors (many!) had never seen an SCLE rash & left me in diagnostic purgatory for a very long time.

Did a dermatologist PROVE that your lesions are "discoid", by skin biopsy with (if necessary) immunofluorescent stain tests?

Did your doctors run *specific* autoantibody tests? ANA is only a threshold test & doesn't diagnose any disease. In lupus, as many as sixteen antibodies are possible. The two most specific are anti-ds-DNAS and anti-Sm, but some people have NEITHER of those. (For example, I was positive for anti-Ro.)

My understanding is that if you have ANY kind of lupus rash, you do have lupus, to some degree, that is.

As for protein in urine: as you say, other things can cause that. You mentioned UTI's, and stones are another culprit. (I used to get stones & chronic UTI's, but not due to kidneys, furtunately.) Have you seen a urologist? Had a kidney function test?

HELPFUL LUPUS AUTHORS, available in most libraries: In the U.K., Dr. Graham Hughes. Also, several U.S. authors hopefully available: Dr. Daniel Wallace or Dr. Robert Lahita. Also, I hope others here can give you suggestions on working within your health system. Keep us posted, OK? Best wishes to you! Sincerely, Vee

Last edited by VeeJ; 01-13-2009 at 03:52 PM. Reason: added questions

Old 01-13-2009, 04:22 PM   #3
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ScottishLass HB User
Re: Desperate

Hi Veej

Many thanks for your reply and explanations of the different forms of Lupus.

The lessions are always disc shaped, they burn as opposed to itching. When they begin to heal they can both scale over and fade or some leave depigmentation. I had a biopsy last month, but unfortunately as I had had the lession for about 3 months most of the tissues where dead, although they found Lupus they ruled the test incomplete. I now have to wait for a new legion to get another fresh biopsy.
As for the sample, a student dr sent it to be analiszed, but did not book me in to re-attend the clinic, so after much calling around I was told that there was no UTI present, but no explanation was given for the protein and blood.
The blood test where your basic FBC and ANA tests. I had low platelets (always have done, had severe pre-eclampsia and Hellp syndrome with my first pg at 20 weeks.) I was also slightly anaemic. The ANA was (Slightly Positive), but apparently not high enough in Scotland for them to take seriously.
I have an emergeny referral to a rheumi on Monday, so hopefully he will be more help than the last one who left me to his student.
If I could even do something about the fatigue I would feel so much better. I have a 4 year old and a 2 year old, and it makes life impossible at times..


Old 01-14-2009, 05:01 AM   #4
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Re: Desperate

ScottishLass, hello again.

Those groupings I described earlier are considered "fluid", in that the disease is better described as a continuum. For example, most people with discoid lesions have mild disease, but a small percent do progress to full SLE.
And in the SCLE group, a very decent % do not get "major organ involvement", but milder systemic problems like anemia are common. In classic SLE, of course, odds of major organ involvement are the highest, but far from "guaranteed".

Lupus patients are eligible for the mildest group of meds, the antimalarials, IF they do not have major organ involvement. For example, I've been on Plaquenil for some years now. It's helped me a LOT with fatigue, pain, rashes, anemia, migraines, urinary & GI problems, etc.

1. I was also told optimal timing is when lesions are new & "on the rise".
2. Also was told that "deep-punch" (not surface scraping) most useful.
3. Also, had additional tests applied to my last skin samples, called "immunofluorescent stain tests", because these are often truly definitive. In lupus, where aberrant immune "junk" has built up between the dermal & epidermal layers of skin, these often light up in a way that's 100% specific to lupus (meaning happens in no other condition).

Excellent news that you've gotten an emergency rheumie appt. set up! Let us know how it goes, when you have time. Meanwhile, best wishes to you & your little ones, too, from Vee

Old 01-15-2009, 08:49 AM   #5
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Location: new york city
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jesmicole HB User
Re: Desperate

I am new to this site and I just read your post about skin biopsy. They diagnosed my lupus 2 weeks ago from a biopsy and from what I have read, you don't need to have a rash in order for them to find lupus in a biopsy. I will try to find the site or book that I got that information out of. As for the exhaution, i agree with you. They put my on Plaquenil after 8 months of prednisone and most days I can hardly move. It's aweful. I hope this information helps. Lisa

Old 01-15-2009, 05:57 PM   #6
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Re: Desperate

ScottishLass & Jesmicole (Lisa), What Lisa justed posted about testing nonlesional skin is something I've read, too. Dr. Daniel Wallace describes the "lupus band test" in his hardcover (available in many libraries). He displays a chart showing the %-age odds of positive results, for SLE vs. discoid, each charted against lesional vs. non-lesional skin. SLE + lesional skin is the combo showing positive results the most often; but that % drops a lot on non-lesional skin.

The dermatopathologist to whom my rheumie sent me for my last skin biopsy did some sort of immunofluorescent stain tests (maybe the classic LBT? I'm not sure) on *all* my punches, both new & old. He had me contact previous labs & have old skin samples sent to him. (Labs have to retain them for "x" number of years.) So it's possible to perform additional tests that were overlooked on previous biopsies, if the old punches have been properly maintained & sent along.

For what this is worth... Best wishes, Vee

P.S. to Lisa: Welcome! I'm glad you found this group. I hope the Plaquenil starts kicking in soon. I think it was in that same hardcover that I read it can take 3-4 months to reach FULL effect. Hang tough. Vee

Old 01-16-2009, 01:00 PM   #7
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ScottishLass HB User
Re: Desperate

Hi Lisa

I have an app with a new Rheumie on Monday and an app to see my derm on Tuesday. I have 2 new lesions, so I am hopeful that we can come up with some sort of positive diagnosis and treatment plan.
There are just so many symtoms that sometimes they can change by the hour. My new lesions started a few days ago, the muscle and joint pain have increased quite a bit since they appeared. I slept from 7pm last night until 4pm this afternoon, so I would say that the fatigue has worsened as well. I have found this the last 2 times that have new lesions, with me they are a sign that I'm going to feel worse. I also feel as though I am running a temp all the time.
Vee has been realy great with providing information (thanks Vee). I hope that the plaquenil will work better for you. There is nothing more annoying about this condition than the fatigue. Good Luck.

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