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I researced,have 6 criteria

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Old 05-04-2006, 05:20 AM   #1
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I researced,have 6 criteria

I am 41 Years old,and Female.
I researched for 2 days straight on computer,I have 6 of the 11 Criteria of Lupus, Iwill get the Lab results on the rest tomorrow 5/5

All Criteria on the List below have been Medically Diagnosed and/or Documented.
I was being tested for RA in this past year,so far everything came back Inconclusive.

1. Malar ; Butterfly rash on cheeks/nose for a few years now,Progressivly getting darker.

2. Photosensitivity ; Rash on face gets purple/blood red in sunlight,and the rest of my face,neck and chest turn Deep red for hours afterwards,{ I never thought about me having photosensitivity till I read the Criteria list}

3. Mucus Membrane Ulcers ; about every 2 months I get sores in mouth and/or on lips

4. Arthritis in 2 or more areas ; Have Arthritis in both knees,hands,fingers,shoulders,back.I walk with a Cane.

5. Pleuritis/Pericarditis ; Have had Pleuracy multiple times in past 3 years{medically documented} Have ILD { Interstitial Lung Disease} ****, Asthma,Have had Pneumonia and Broncitus multiple times in past 3 years and Hosplitalised 3 times for Pneumonia and Lung related infestions.All started to manifest 3 years ago.

6. Brain Irritation ; Diagnosed with Bi-polar ,Severe Clinical Depression,PTSD in 2002,have had Psychosis/Delusional episodes of Terror.Had to be Extra medicated for weeks at a time till delusions past.

Not on Criteria List.....

1. Fever ;,but have had Medically documented fevers for 2 years of unknown cause

2. Fatigue ; Exausted all the time,never feeling "Good"

3. Achy/sore muscles and body all the time.

4. Headaches ; Not all the time,but atleast 3 per month

I am planning to show my Doctor the criteria list tomorrow,My Facial Rash is very hard to miss,It has become very deep red in this past year,and never goes away,so he definatly can not miss that.
I just changed to this Doctor last week,so hopefully he will put all the Documentation together of the past 3 years and see what the last Doctor couldn't or wouldn't see?
I hope someone on this board can give me theyre thoughts on all this,I am not asking for a diagnosis,just your story or thoughts?Thank You.Have a wonderful Day All

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Old 05-05-2006, 03:10 PM   #2
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Re: I researced,have 6 criteria

Dear Heartburnless, I've only posted a bit in the past few weeks (horrible spring family-wise, household electric & electronic messes to handle, etc.) But I sure hope you don't think you were being ignored deliberately. We wax & wane here, sometimes, it seems.

I hope your lab results came back & brought your dr. and you some much-needed sense of direction. I'm no doctor (just a patient like everyone here), but from reading & posting here, from what you wrote, looking at lupus, antiphospholipid syndrome, vasculitis, etc. seems to make a lot of sense.

From your post, I'm not sure which blood labs were done---hopefully all the *specialized* tests (ANA, anti-DNA, anti-Sm, anti-Ro, anti-La, anticardiolipin, complement levels, ETC.) in addition to the "basic" blood panels & urine tests.

As for my story, I was a classic "subacute" from childhood: shin pain, fevers, blistery rashes, fatigue. In my 20's, GI & urinary problems. In my 30's, migraines & anemia. In my late 30's, weird circular rashes on my arms & torso, never my face. I was ANA-negative throughout (at least I think I was!). Was treated for Lyme several times (wrongly). More skin biopsies. Finally took myself to a teaching hospital rheumie & finally found to be positive for anti-Ro. Dx: the SCLE (subacute cutaneous LE) subset of lupus.

I think I can understand why my own long history was misunderstood, at some level, anyway. But when I read *your* post, a lot of what you wrote seems classic enough to at least raise the autoimmune (lupus, etc.) RED FLAG much more clearly, doesn't it?

Anyway, I hope you got those results today & that you post more when you can. Best wishes, Vee

Old 05-05-2006, 05:15 PM   #3
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Thank you Vee

I want to thank you for replying and telling your story,and responding to my questions,I do appreciate it very much.
I did not get the results today,what I thought was the ANA and other Lupus tests,was not, but I did talk to him about my suspisions of Lupus today,and showed him the "Criteria List" from this board,and he did agree with you and me Vee,that I definatly do show the 6 Criteria I pointed out to him.He gave me the Lab order to get the "Lupus Panel along with my Lipid Panel. I go back to see him on June 2nd.{he wants to wait 1 month so he can also get results of lipid panel after being on this new cholesterol pill for a month.}
I had not heard anyone speak of the " Lupus Panel" here before,so I was surprised to see it on the Lab sheet,but then again,it could be called another title and I would not know it.
He started me on Vytorin and Diovan HCT today,because my blood Pressure has suddenly done a high jump in the past month, and my Ankels,feet,lower legs are 3 times normal size.and my "EX Clinic" was doing nothing about it,no Labs....nothing.and my Cholesterol went up to 240 after being on Zocor for 6 weeks {I think the cholesterol was laughing in the Zocors face Heh? }so he also changed that.
Again I thank you,and I apolagise to everyone if I offended them today, that was not my intention, I think I was getting overwhelmed by my illnesses, and really needed someone to talk to.Please except my apolagy and my grattitude for your response.
Is your lupus under control now Vee? Can Lupus be controlled?
You sure have had alot of years with this Illness Vee,You must be a very strong person after all this.You seem like a very kind person also.
I hope you and everyone here has a "GOOD" day today,and are able to get some joy out of life today too.

Last edited by heartburnless; 05-05-2006 at 05:32 PM.

Old 05-05-2006, 09:32 PM   #4
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Re: I researced,have 6 criteria

Hey there, Heartburn---"Lupus panel" surely sounds to me like some lab's internal code for the whole battery of tests associated with lupus & related syndromes & diseases. This sounds GOOD to me, that a whole BATTERY was probably ordered for you. You could ask for copies when the labs come back, to see what specific tests were ordered, and the results. That's always a good practice, to get copies for your files, especially while you are in Dx-search mode.

I hope your blood pressure responds quickly to the new meds you were prescribed today. And the swelling, too.

You didn't offend, by the way. How COULD you?! So many of us have gone through such similar crap (sorry---no better word to substitute). Having so many things going on, and on so many fronts---how could you NOT be frustrated? Then someone finally uses the words "autoimmune" & "lupus"... It's overwhelming when you first hear that.

I hope you've read that, even if it IS lupus, most people maintain solidly today, given modern medicine. So---just KEEP GOING AT IT, OK, and look for explanations! And we'll all keep you company anytime you post. Bye for now, from Vee

Old 05-05-2006, 09:48 PM   #5
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Re: I researced,have 6 criteria

Thanks again for your support Vee.
Yeah I figured the same thing with the " Lupus Panel" that it must have the whole shebang in it.
I will continue to post here,I do know that this is a good place to be while going through all have made me feel very welcomed today,and it is very much appreciated.

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