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Old 08-15-2009, 07:53 AM   #1
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not quite diagnosed

Hi, I am in the tedious process of being diagnosed. My Rheumatologist is going back and forth between MS and Lupus. My grandmother had lupus and I have about ALL of the indicators to having lupus. But, so far, my bloodwork is all negative. I started taking the depomedrol injections and they have helped tremendously. I have the most horrible heat waves and a very cloudy brain sometimes which are the only things, I think, that sound like MS. I neraly pass out in the am I am so overheated when I get out of the shower. I had a negative MRI of brain, and really think I have lupus. My DR says he is 98% sure it is lupus despite the neg tests. He will recheck every 6 months bloodwork. Any advice would be greatly appreciated. Up until this point my symptoms have been countinuously passed off as fibromyalgia(which my Mom and sister have both been diagnosed with). I am disgusted and not sure what to do?

 
Old 08-15-2009, 09:42 AM   #2
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Re: not quite diagnosed

Flowermum, hi & a big welcome. You're so right that the process is extremely frustrating. Obviously I'm just a patient, so please take what follows in that light, OK? So, in no special order---

Helpful lupus hardcovers, available in most libraries & larger bookstores: look for Dr. Daniel Wallace &/or Dr. Robert Lahita.

Diagnostic criteria: To be Dx'ed with *systemic* lupus, a patient usually (not always) must meet 4 or more of the 11 ACR criteria, at some time, meaning not necessarily simultaneously. See the "sticky post" (permanent info post) at top of thread list. Do these ring bells with you? Does it seem to you that your rheumie has been looking for & testing for these? (There are lesser forms of lupus for which you may meet fewer than 4.)

Bloodwork: One mistake I got caught in was that some of my local drs. looked too heavily at ANA & didn't test simultaneously for *specific* autoantibodies. (Turned out I was in a VERY small "subset" called "Ro-lupus" that stays ANA-negative.) Also, another mistake I encountered was some of my local drs. seemed to believe that the only 2 autoantibodies possible in lupus are anti-ds-DNA & anti-Sm---NOT TRUE; Dr. Wallace lists about 16, of varying "specificity" (meaning usefulness to a dx of lupus). Have you asked for copies of your labs to see what tests have been run? Have you been tested for specific autoantibodies (as opposed to just ANA, which is really only a threshold test)?

Rashes: Do you get any? If so, have you seen a dermie? FYI, there are 12-15 lupus-specific rashes. (My local drs. looked only for discoid & malar, but I had another kind entirely. Eeek!) Anyway, gold standard is deep-punch skin biopsy plus immunofluorescent stain tests, done by dermatologist or dermatopathologist.

I'll stop here for now. I hope you write more soon. Meanwhile, I can sympathize. I battled a raft of problems from childhood on & ended up having to go to a teaching hospital rheumie for answers. What a varied disease this is! For people with "variant" presentations, the diagnostic journey can be even worse than the norm, which is hard enough for the "vanilla" versions! Anyway, with my best wishes, Vee
(P.S. I grew up in PA & still miss it to this day!)

Last edited by VeeJ; 08-15-2009 at 09:51 AM. Reason: typos

 
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Old 08-15-2009, 05:46 PM   #3
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Re: not quite diagnosed

Flowermum, I also was diagnosed first with FMS and went through countless procedures, meds with no successful improvement. I was elated to be sent to a different Rheumatologist, who finally diagnosed the lupus. I say elated because the lupus treatment has definitely improved the fibro symptoms as well as being on a treatment for the lupus. Of a wide array of blood work, I had four indicators of lupus, but most important, is the fact that this doctor who specialized in FMS also knew that a lot of my FMS symptoms overlapped with the lupus ones and it was hard to separate the two. One of the stickies above addressed that very issue of simulataneous diagnoses and the difficulty in distiguishing which disease is actually causing one to flare at times. Even though, I am not a textbook lupus case, I am glad that he looked at that possibility and allowed me to try the lupus treatment as I was at my wits end looking for some improvement in my health with no obvious answers. As I have read, not every patient will have the positive blood work and it actually can be positive at times (ANA) and negative at others. I do hope you find some answers and suiitable treatment. I know how frustrating it can be wanting to feel better and at a loss for a solution.

 
Old 08-17-2009, 11:41 AM   #4
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Re: not quite diagnosed

hi flowermum welcome to the cyber family!
sorry you are having such a tough time but believe me when i say you are not alone! (not anymore)
dr wallace The Lupus Book has a section on negative ANA and his research shows that 3-5% of lupus patients continually test negative (even in a full flare) that is why it is only 1 of the 11 criteria and never the only way to dx lupus. symptoms are the key ... so as hard as dx limbo is you will meet some fantastic people that truely know what you are going thru!
Hang in there!

Last edited by Angel MJ; 08-17-2009 at 11:44 AM.

 
Old 08-19-2009, 08:44 AM   #5
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Re: not quite diagnosed

Hi, thank you all for replying to my plight. I have my bloodwork-sed rate 6, ANA neg, rheumatoid factor neg, that's about all he tested for I guess. I also have alot of allergies suddenly and have been getting shots for them. Maybe I should see a neuro too.

 
Old 08-19-2009, 08:48 AM   #6
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Re: not quite diagnosed

I do have round eczema type itchy rashes scattered. I have been seeing a dermatologist for years for that. They do seem a bit worse this year. Usually the rashes get worse in the winter and sunlight improves them. This year though, the more sun I got the more small circular rashes I got. They seem to go away with just eucerin cream. But they have left some scars I noticed.

 
Old 08-19-2009, 08:56 AM   #7
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Re: not quite diagnosed

I don't know much but small circle rashes that scar, that sounds like Discord rash, right? Is that the name of them?

 
Old 08-19-2009, 09:24 AM   #8
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Re: not quite diagnosed

Flowermum, rashes can be very helpful in ruling lupus "in". Did your dermatologist ever perform a deep-punch biopsy of your rash? Those findings, plus immunofluorescent stain tests, can often (but not always) identify a rash as being lupus-specific.

Alas, these skin tests can't determine what specific *kind* of lupus rash it is, meaning discoid vs. SCLE vs. malar vs. etc. The dermie decides that, based on appearance & behavior (does it scar, depigment, etc.)

And rash type doesn't define the "degree" of lupus a person has. Whether a person has *systemic* lupus vs. one of the milder "subsets", is determined by the ACR criteria.

What do your new "circular rashes" that seem to scar look like? I'm curious if they're targetlike, with clear centers---or solid. (Just curious, as I had a LOT of rashes!)

I hope above makes at least some sense. Post more when you can, OK? Meanwhile, sending best wishes, Vee

 
Old 08-20-2009, 11:56 AM   #9
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Re: not quite diagnosed

Rashes can also rule "in" Lyme Disease.

Circular rashes are fairly common with Lyme. They say that classically, it's a bulls-eye shape but I have heard recently that any circular rash can be indicative of it.

It's also one of the diseases that has to be ruled out when considering MS, I know (not sure about Lupus).

 
Old 08-20-2009, 06:31 PM   #10
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Re: not quite diagnosed

flowermum, about Lyme bull's-eye rash vs. others... My first rash was a perfect circle, which struck my first dermie as NOT looking terribly Lyme-like, because it was so "perfect" a circle. Nonetheless, I was given an antibiotic for Lyme. But my circular lesions REAPPEARED, every 3-4 months or so, for years on end. If I were you, I'd ask if LYME rashes tend to recur. If NOT, then I hope your dermie considers *other rashes*. For what this is worth... But I'm just a dumb patient, so please take this in that light, OK?
Best wishes, Vee

 
Old 08-24-2009, 08:09 AM   #11
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Re: not quite diagnosed

I'm pretty sure they've already ruled out lyme disease. I have a darker rash on my face as well, but it doesn't look like the classic butterfly. It looks like my face is dirty!

 
Old 08-25-2009, 08:04 AM   #12
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Re: not quite diagnosed

Re: Ruling out Lyme Disease

Doctors usually run the standard tests for Lyme disease and rely on the results alone (without taking into account clinical symptoms).

Unfortunately, the sensitivity of Lyme testing is at *46%*, far below the 95% cutoff required for an *accurate* diagnostic test (and far worse than the 99.5% sensitivity of commercial HIV testing, for example).

So doctors *cannot* rule out Lyme using these unreliable, faulty tests (and yet they do).

This means that the only reliable way to rule it out definitively or to get a diagnosis is to find a Lyme literate MD in your area. Most other doctors (even ID docs) just do not know enough about Lyme disease to diagnose you clinically or rule it out clinically. It is a specialty.

I'm not sure if your particular facial rash is a symptom of Lyme. A Lyme doc would know, though.


Quote:
Originally Posted by flowermum View Post
I'm pretty sure they've already ruled out lyme disease. I have a darker rash on my face as well, but it doesn't look like the classic butterfly. It looks like my face is dirty!

 
Old 08-25-2009, 09:40 PM   #13
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Re: not quite diagnosed

Flowermum, I'm probably repeating myself here, but one way to (hopefully) learn whether a rash is/isn't LUPUS-SPECIFIC is by a LUPUS BAND TEST, which is deep-punch biopsy, with---and this is a critical add-on---immunofluorescent stain tests. The tests looks for immune deposits between the dermal & epidermal layers of skin, an aberration that's seen in lupus. (Lupus is one of the few diseases where this occurs.) The tests are most useful when done on lesional skin. To read about the lupus band test, look for Dr. Daniel Wallace's lupus hardcover, available in most libraries & larger bookstores.

The reason I repeat this is that I went to dermies for MANY years but wasn't given the right tests! Multiple dermies did punches but failed to call for the immunofluorescent stain tests. (Bummer.) I was tested & treated for Lyme, but was eventually Dx'ed with lupus, not Lyme.

My main point is this: not even a grade-A dermie can eyeball a rash & know what it is, without further tests. Hopefully a CURIOUS & SCIENTIFIC dermie would look at wide-ranging possibilities (Lyme, lupus, etc.), run broad tests, then keep narrowowing down the possibilities. But obviously I'm only a (dumb) patient, so please take the above accordingly! Warm wishes, V.

 
Old 08-30-2009, 07:54 AM   #14
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Re: not quite diagnosed

Dear Flowermum,

The type of rash you are describing is exactly like mine. Vee is right..you need a dermy that understands the difference in rashes as well as get a punch biopsy. Most are glorified makeup specialists.The first dermy I went to said it was rosacia.(looked nothing like it) The meds he gave me were the worst a lupus patient could take. (i had a positive ana and lupus dx 2 years prior) I told him I had lupus and he didn't believe me! After a few months of taking his meds my face was burned beyond repair. It looks dirty. I then went to a teaching hospital in Boston and after a look at me the new dermy asked me for the other ones number. She left the room and for ten minutes read him the riot act. Now...what is my dx you ask? Lupus SLE, Lupus disoid, RA (conective tissue disease) You can have more than one....good luck

 
Old 08-31-2009, 09:07 AM   #15
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Re: not quite diagnosed

Thanks, I have alot to do, I guess!

 
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