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Old 01-15-2010, 05:59 AM   #1
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Unhappy Frustrated

I was diagnosed in June by by PCP as having SLE. He promptly scheduled me with a rheumatologist to start a treatment regimen. This a believed was a great thing, I have been suffering the effects for the last 6 years on a steady basis. I have gone the gauntlet with tests to eliminate EVERYTHING else. He based his diagnosis on ONE positive ANA test when I presented with the rash, migraine, fever, joint pain and of course that one positive test. Mind you that test prior to this was negative and has been since also.

My rheumy doesn't want to give the diagnosis based on negative labs. I have gone again through it all. I am so tired, in so much pain, the rash is driving me nuts, the sun hurts, my hair is falling out, I am losing my teeth rapidly, the canker sores prevent me from eating, my cognitive levels decrease, I can't go in the sun and frankly the depression is eating me up! I feel so guilty for not feeling well and not functioning to the standard I used to. The kids and hubby don't understand and I am terrified!

My dad died from heart trouble, actually his aorta exploded after having congestive heart failure and diabetes, mom has RA as do many other members of my dads siblings and moms siblings, two family members with parkinsons.

What I need to know is how to communicate to the rheumy that it is imparative that she get on board with my diagnosis from my PCP who has taken care of me since I was 11 years old. There is nobody but me that knows me better then him or my medical record. I am beyond frustrated!

My PCP put me on prednisone "burst" for this round of flare, it seems to be working as the pain is diminished after only 48 hours of dosing. Is that normal for it work like that?

 
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Old 01-15-2010, 07:28 AM   #2
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Re: Frustrated

msbhve, hi & welcome. Couple of quick thoughts... Since you've had rashes, maybe a dermatologist could do a skin biopsy with immunofluorescent stain tests. These stain tests can (not always, alas) light up in a way that's just about conclusive of lupus, so they can be quite valuable in someone whose bloodwork vacillates. (Also, what does your rash look like? Where is it? Does it scar/depigment? Etc. Only curious, as I had two different kinds of lupus rashes over the years...)

ANA may be positive in a variety of conditions, so I can fathom why rheumie wouldn't Dx based on a single positive. Usually more specific autoantibody tests are run, like anti-ds-DNA, anti-m, anti-Ro, anti-La, rheumatoid factor, etc. (There are a lot.)

Have you seen the "sticky posts" at the top of the thread list? They're permanent info & are marked with a little icon that looks like a note thumbtacked to a bulletin board. You'll find more info on diagnostic criteria, tests, library books, etc.

Hope others chip in soon. More later... I'm on the fly today but will check in again later. Bye for now, with best wishes. Sympathetically, Vee

 
Old 01-15-2010, 09:27 AM   #3
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Re: Frustrated

The rheumy did every test known to man i think on my first visit, I gave darn near a pint of blood to the university that day

My rash is on my face primarily, cheeks and nose...right now its extending to my chest...it looks like a sunburn or severe blushing. Smooth and no bumps, my eyes burn and the skin is a bit itchy/burny. I have seen a derm once and he decided it was rosacea due to the lack of proof for lupus. There was not scrapings or anything involved just straight up viewing it. He did note ocular involvement and put me on doxycyclene which did NOTHING for it. I try to use the sunscreens and they don't seem to do much for it either other then making it burn worse. I am in the market for a good sunscreen without a bunch of junk in it like perfumes and what not but havn't been able to locate one that does't affect me yet

I have severe reactions to the sun, holy cow it feels like I am burning alive when exposed to sunlight, I used to tan in the beds and had to quit a couple of years ago due to rashes from them. I thought it was the close proximity to the lights or maybe the cleaning solvents...I think I know different now. Also I seem to have a reaction to glues on patches for transdermals...is this something of significance with SLE?

 
Old 01-15-2010, 12:11 PM   #4
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Re: Frustrated

msbhve, not a good story! I'm merely a patient, of course, but here are some other thoughts.

About your RASH. FYI, there are MORE lupus rashes than "malar". "Discoid" tends to scar &/or depigment. People can have discoid lupus (DLE) without positive bloodwork. These folks meet fewer than 4 lupus criteria (the # needed to diagnose SLE), but can have pain & fatigue along with the rashes.

And there are two forms of "subacute cutaneous" (SCLE) rashes. Psoriasiform looks like psoriasis (but isn't), and Annular looks like rings with clear centers. These can be facial, on torso, etc. Neither tend to scar or depigment. Weirdly, SCLE folks may meet fewer than 4 *or* more than 4 criteria, I was told. Many test positive for anti-Ro, which is seen in both lupus and in Sjogren's Syndrome.

(Speaking of Sjogren's... symptoms include dry eyes & mouth, pain, fatigue, etc. I *think* ANA is often quite high in Sjogren's, but don't know if ANA vacillates as flares come/go. Lip biopsy is the most definitive test.)

There's also a "tumid" rash, which I *think* can create quite a dramatic redness on face & V-neck area.

AND there are a handful of other lupus rashes that are less common! In short, any dr. who only knows about malar rashes isn't up to par, in my book.

Also, I think I've read that rosacea is VERY hard to distinguish from a lupus rash merely by looking at it, for what that's worth. Any chance you could try another dermie, perhaps one recommended by the rheumie you see?

HAVING ONE SET OF BLOODWORK: It took my drs. a long time to "trap" positive results, so I'm wondering if your rheumie might not have tested you at an optimal time. Did he tell you to return if symptoms persist?

YOUR PREVIOUS DERMIE FOUND OCULAR INVOLVEMENT. What did he find? Did your rheumie know about this? Did he do anything special to follow thru?

I ad a heckuva time getting help. I had the bad luck to stay ANA-negative, which is very rare. Plus, my only rashes for many years were SCLE type, which no one locally recognized. (SCLE was formally defined only in the late 1970's.) I fianlly saw a metro teaching hospital rheumie, who then sent me to a dermatopathologist ( = dermatologist who does his own pathology, meaning labwork). After years of trying, I got answers in a few weeks. The dermatopathologist was the best dr. I've ever met, and he made it look easy!

Doing a biopsy & inspecting skin under a microscope is apparently useful but not definitive. As a second step, dermies do those immunofluorescent stain tests to look for deposition of "immune junk" between dermal & epidermal layers of skin. The seventh (!) dermie I saw knew to do the stain tests.

I think a lot of people with lupus have reactive skin, but in & of itself, I don't think it's useful diagnostcally, as so many people have sensitive skin.

I think finding a top-flight dermie (better yet, a dermatopathologist) could help. Because no matter what your blood results are, no one can fail to see your vivid rash, so you can't be making it up, right? Post more when you can, OK? Bye for now, Vee

 
Old 01-16-2010, 04:02 AM   #5
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Re: Frustrated

Hi msbhve - I just want to try to help you out with the sunscreen as I also have a horrible reaction to the sun. The only sunscreen I seem to be able to use is one for babies. Shoot not sure I can post the name - anyone know? Well it's sold at Babies r us and it's waterproof, spf 50. It's not a cure all however it seems to be the only one that gives me some time in the sun.

 
Old 01-16-2010, 04:42 AM   #6
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Re: Frustrated

Thanks Vee! My issue is that ONLY negative labs...I have everything right down to hematuria unexplained during flares, of course its microscopic and I don't notice it.

I think my list would be easier to go by what is NOT affected at this time which is I have no pleurisy

I know my PCP is correct. He was the one that diagnosed a stomach ulcer when I was 12 and started to question my health at that time. The rheumy I see is at the University of Michigan so is the dermy she referred me to. I have another appt in March down there. My insurance isn't accepted by docs up here in hickville so I have to travel 4 hourse one way to see the docs. On these trips I have to travel after dark (of course) to make sure I don't rash out and end up sicker. When I have been there I wasn't flaring, well I think the last time I went I was kicking into one along with the h1n1 virus. But i do know she didn't do much in the line of blood work at that time.

I was so sick I just wanted to sleep and wasn't in the right frame of mind either to demand answers. I am writing things down this time in preparation. I did try to get an ANA test done during this last flare but by the time the dr's office was open and I was coherent enough to call and ask for one it was almost over

 
Old 01-16-2010, 06:12 AM   #7
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Re: Frustrated

Msbhve, lupus is a spectrum. Labs typically stay negative in the mildest form, DLE, meaning discoid lupus erythematosus. On the other end of the spectrum, SLE, labs are positive at some points. In the middle---the SCLE subset---both positive & negative are possible.

(I was ANA-negative but positive for anti-Ro, which happens only 3% to 5% of the time. I'll always wonder how many drs. along the way ran JUST ANA, then never ordered more specific tests once they saw the negative ANA...)

If you do manage to set up a skin biopsy: I was told optimal timing is when a rash is fresh. (How long does your rash usually last before it fades? My lesions lasted at least a month but were brightest when new.)

If your rash is a lupus rash (which only tests can prove), it sounds to me like you're looking for ones that can spread downward to throat & V-neck area. I'm pretty sure people here have written about the following kinds: malar, both SCLE types, tumid, and discoid... maybe some others, too. Anyway, you could read thru old posts; or you could start a new thread asking who has had rashes that go beyond face to neck/throat/chest. Maybe you'll get info for your list of questions, is my thought.

As you prepare for March appt., I really recommend the reading materials in the "sticky posts". You wouldn't have to read every line of the books: just use table of contents & index in back to find topics you're interested in.

Post anytime, OK? Someone is always here for you. Meanwhile, warm wishes, from Vee

 
Old 01-23-2010, 06:16 AM   #8
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Re: Frustrated

Thank you so much! All of this is so overwhelming. I want to feel better and I can't understand logically why the docs wouldn't want the same thing for me. I know that isn't accurate but its how it feels most days with the denial of diagnosis from one while the other is just as adament with sureity.

I have had 3 seizures this week. The stress is through the roof around here. My daughter saw the seizure for the first time ever and now she is terrified that I am going to die! I need help not only for me but for my family as well.

The steroids are blessedly keeping the pain in check for the most part right now, my face is on FIRE most of the time, I did find that an after sun aloe lotion feels very nice and does tend to calm it a little bit. Also I am having INCREDIBLE night sweats..is this part of it too? I went through menopause (surgically induced) 7 years ago and this is a lot worse then that EVER was.

Should I be concerned?

 
Old 01-23-2010, 07:14 AM   #9
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Re: Frustrated

Good morning. Did you mention earlier that you get seizures? Did you speak with your dr. this week after having several? I don't think you ever want to ignore those! Please let us know how you're doing when you can. Best wishes, Vee

 
Old 01-23-2010, 11:57 AM   #10
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Re: Frustrated

Can I ask if you would explain your seizures? I have not been diagnosed yet either. Still waiting to see a specialist.
However, sometimes especially when I am having a real bad time my head will feel pressurized and my ears will ring. Sometimes it gets so bad that my hands will loose function and I will think I am doing something but I am not. Let me explain what I mean.
I was sitting at my table writing down what was happening at the time (symptoms) and my head began to feel severe pressure, ears began to ring, I continued to write (so i thought) when the pressure calmed the paper I thought I was writing on was not there. I looked everywhere (even though I had not moved). It as if I blacked out and thought I was doing something I was not.
When I don't black out I loose control of my hand. My handwriting looks like chicken scratch.
Sometimes the pressure is bad enough I will hear things. Usually like people or a radio talking in the background. I am intelligent enough to know nothing is there but it is still scary.

 
Old 01-23-2010, 12:28 PM   #11
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Re: Frustrated

No I didn't contact the doc yet, the issue was relating to my daughter (18) causing a HUGE drama and ultimately being removed by officers from my home. She, my mother, my sister and some others have decided that because I am ill (or faking it as they claim) I am unfit as a parent with my meds and other stuff going on.

The seizures are not uncommon for me I have had them since I was a baby, I believe my first one was when I was only several months old. They are gran mall (not really sure of the spelling). This last time it began with pressure in my head or a tightness, then my face on the left side went numb and felt fat similar to how it feels when you get an injection from dental work, then I got woozy and the next thing I knew I was coming to on the floor and my husband sitting with me, I promptly vomited and felt exhausted, my muscles hurt, my head hurt and I was slightly twitching in the muscles for a while afterward and then slept for a few hours. I woke up feeling better but still feel dangerously close to more of them.

I see my doc this week and I will be calling his office monday to see about getting in to see him sooner if possible.

 
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