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Frustrated at no diagnosis!

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Old 02-24-2013, 02:53 AM   #1
Join Date: Feb 2013
Posts: 2
Bekaki HB User
Frustrated at no diagnosis!

Hi all, newbie here

I'm so frustrated, lack of diagnosis for my medical issues - and I guess, despite being 'given-up on' by multiple doctors, I'm kinda looking for someone, anyone to say I'm not just imagining my condition, that there IS indeed something wrong, and I'm not crazy or pushy for wanting to know what that is! I've read articles on soooo many different conditions and in all honesty, lupus seems to be the closest 'fit.' Let me tell you my story. I would appreciate any thoughts, I'm reaching despair.

I developed a rash a couple of years back. On my right elbow (outer), amazingly itchy (non-scarring), like, I'd actually break skin scratching. Then, after a few weeks, it disappeared from the elbow and seemed to 'jump' to the other elbow! A few weeks after that, it returned to the other elbow, so it was on both - then started to spread - it has since been on both arms, right down to wrists, and about halfway up upper arms. I saw 4 different GPs (over manyyy months, and numerous trips) about it, and each prescribed me topical cortisone creams (stronger and stronger with each subsequent visit)...and the stuff did NOTHING. Finally, a GP referred me to a dermatologist.

This doc took a couple biopsy punches, which came back with an 'I don't know' from the lab! They said it was not dermatitis or eczema, or this or that, but ultimately had no idea and suggested a tentative cutaneous lupus. So the derma put me on more blasted cortisone cream (again, didn't work), had me swear off soap/fragrance/perfume etc - and put me on plaquenil (?) for 5 weeks, to see if it did anything for the rash. It did. It *almost* completely disappeared! Even after 3 days, I was amazed at the difference! He then tested me for SLE, although he was fairly confident that I had cutaneous lupus. The tests came back as negative, and he said I even had a result for "ro" (?) that indicated that it wasn't even cutaneous lupus. So he tested for Ross River Fever (negative), and then basically gave-up and told me to just happily greet all my symptoms when they flare-up - obviously thought it was all psychosomatic or something

I'd told him that I had multiple 'issues' that all seemed to appear within the same 6mth time period, and seemed to be getting worse, or at very least flare-up together. He said that he was positive they were all connected...and then just gives up?!? But yeah, these symptoms are the reason I took interest in the possibility of my having some form of lupus...

* Rash (mainly arms. Occasionally on back, legs, forehead, neck). Made much worse by sun-exposure. Looks *kinda* like hives, but a LOT of them...during the worst flare-ups, it looks like a red/pink bubble wrap!
* Joint pain in knees, hips, elbows, shoulders, back, fingers. Crippling at times. Seriously, I'm only 32 and at times made groans like I'm a 90 y.o arthritic...I am actually 'double-jointed' but these days, I feel sooo stiff, especially in knees and fingers.
* High bodily temps although prior to a couple years ago I actually ran 'colder' than most people.
* Thinning hair that no remedy seems to fix. Started suddenly about 3 years ago.
* Extreme fatigue - no matter what I've been doing - to the extent that I can awake after a full nights' sleep, be up for an hour just doing general stuff and need a nap again.
* Eyes are considerably more sensitive to light.
* Acute anxiety and depression.

I know I can't rely on someone here to say 'oh yeah, that's *this*', but this does sound like lupus, right? I don't know what to do - I mean, the derma said the "ro" thing showed I didn't have lupus, but it's the only thing that seems to fit? Is it possible to have lupus and still have this test result? I'm so confused and so frustrated - I just want to know what's wrong with me, and seems like docs all just give-up when things get confusing...or assume it's all in my mind or something!

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Old 02-24-2013, 05:27 PM   #2
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Re: Frustrated at no diagnosis!

Hi, Bekaki. What you wrote about "Ro" really caught my attention. I tested positive for an auto-antibody called "anti-Ro" which is seen in both lupus and Sjogren's syndrome.

Also, I had a lupus-specific rash called Subactute Cutaneous Lupus Erythematosus (SCLE) for years, and anti-Ro just happens to be the autoantibody most associated with that form of lupus rash! (Hmmm... ) Maybe you could get your doctors to explain their findings again, and repeat whatever it was they said earlier? Maybe make them spell it? Better yet, put it in writing!

There are two forms of SCLE rashes. One is "annular". In immature form, lesions look like raised mosquito bites; in mature form, lesions are target-like circles with clear centers; these eventally spread out & lose circularity, then fade. The other kind is called psoriasiform or papulosquamous; it looks a lot like psoriasis (but isn't). Both SCLE rashes tend to be very photosensitive. (BTW, you can read more about these two rashes & other skin problems in the "sticky posts". Those are the group of permanent info posts located right above the user threads.)

I had very similar symptoms. Also migraines, GI and urinary problems, anemia, horribly prolonged periods, etc. Sometimes CRP and sed rate elevated & WBC was depressed. My problems actually started in adolescence, then worsened over the years. Oddly, rashes were my last problem to crop up, not until my late 30's.

I bombed out with suburban doctors, so finally took myself to a teaching hospital. My doctors there (a rheumatologist and a dermatopathologist) explained this form of lupus as a rarer "subset" in which people may meet less than 4, 4, or more than 4 of the ACR criteria for systemic lupus. (There's a sticky post above that contains those criteria.) And here's another corker: 30% of people who test positive for ONLY anti-Ro/anti-La remain ANA-negative, which fools most doctors badly since they expect people with lupus to always have a positive ANA. In other word, if your ANA is negative, that WOULDN'T rule out this "subset" of lupus, is my point.

My rheumatologist didn't rely only on bloodwork and number of criteria met. To be double-sure, he sent me to the dermatopathologist for a "lupus band test". The d/p did a new deep-punch, also retested two old punches I'd had. The key step was immunofluorescent stain testing (I think it was called "Alcian" stain). If the stain fluoresces (lights up) in linear bands, that's considered diagnostic of lupus.

If above rings any bells for you, I hope you can use it to make something useful happen! Post again when you can---would love to know how this info strikes you! BTW, I'm not the only one here who's had an SCLE rash: others have posted on both types I described. Anyway, sure am glad you found us & am looking forward to hearing much more! Warm wishes & a hug, Vee

Old 02-24-2013, 05:50 PM   #3
Join Date: Feb 2013
Posts: 2
Bekaki HB User
Re: Frustrated at no diagnosis!

Hi VeeJ, thanks for your response!

I don't remember much of what the derma said about my tests, he was using so many letters describing tests hahah! All I remember is something about Ro showing I don't have lupus at all, despite all the other evidence saying otherwise. He was previously convinced I has Cutaneous at least, and actually initially got me sent off for the bloodwork because he was concerned that many of my non-rash symptoms seemed to fit systemic lupus. I'm thinking I may go visit my GP (who referred me to the derma) and get records off him and beg him to send me to a different specialist. Obviously I tested neg for both ANA and Ro, it seems? I must have, for him to flatly say I've not got lupus? Is is even possible to test neg for both of these and still have lupus? or is it a clincher that my problem lies elsewhere?

OK with regards to rashes, mine definitely sounds like the second you describe - the one that looks like psoriasis, but isn't...the biopsy punch results were clear that it wasn't dermatitis/eczema/psoriasis (but I don't know if they did the band test you mention). I did find it interesting that the lab suggested cutaneous lupus out of nowhere! It IS severely photosensitive...I've actually found that if I get too much sun on skin that isn;t even showing any sign of rash, within a few days of said sun-exposure, it does break out in the same kind of rash. My upper back is currently testament to this!

I've suffered joint issues most of my life since puberty, and physios always just said it was due to my being double-jointed', but the past few years it's taken on a life of its own, and my joints are always either sharply painful of dull achy painful...

Sorry for all the posting, but I just read another thread on here and started wondering...and the thread is now 'closed' so I cannot ask my question there...but it's about seizures? Anyone know?

I've had some stuff that kinda sounds like the things folk were talking about on that thread...severe dizziness where I'm standing, knees feel like they're gonna buckle underneath me, visual disturbances (fuzzy and light), weird ear sounds, and this numb, tingly sensation in my arms/fingers/head...I can hear people around me, but trying to keep control of my body takes all my energy. once it was so bad, I managed to sit down, with my arms outstretched infront of me, my whole family was there, they said it looked like I was just sitting there motionless, but to me it felt like I was shaking. My GP just said it was 'getting up too fast' and something about blood flow, but there's plenty of times I get up fast and it never happens (I have even tried recreating it!), and it's happened many times where I have deliberately taken my time to get up from sitting position?

There's also been 4-5 instances over the past year or so where my brain has completely shut-off in the space of a second. All but one of those times, I had just gotten into my car and turned the ignition on. Then I was immediately confused, like, where am I? What am I doing? I honestly have no idea what's happening at such times. Takes me a bit, then I realise I have to drive, so I go to turn the key but because it's already started, it makes that horrible screeching noise, which totally freaks me out because I have no idea where I am or what's going on. After a bit I realise the car's already on, and I have to put it in gear (then the confusion about clutch and gears ensues lol)...finally, after a couple minutes (I think? No idea how long it all takes, feels like it's all in slow motion to me) my brain starts 'clearing' and I'm able to drive off without problem - albeit quite freaked out about what's just happened.

Do these sound like seizures? I have no idea....I've never really read-up on this stuff before, so kinda had the stereotypical image of convulsing = seizure :S

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