lupus diagnosis??

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velvetmoon
New Member


Date Joined Mar 2008
Total Posts : 3
   Posted 10/14/2008 9:51 PM (GMT -7)   
Hi I am currently under the care of a rheumatologist who highly suspects lupus but has yet to diagnose me due to a lack of a positive anti DNA DS test so far.

Symptoms
bilateral knee/hip pain and swelling
fatigue
mouth ulcers
morning stiffness with pain when breathing in
nausea with vomiting sometimes
Diagnosed with Raynauds Phenomenon
hx chronic hives
all over achine
reoccuring periods of night sweats
anemia

Tests:
multiple positive ANA: most recent result ratio titer 1:64 which equals 640
2 high ESR (sed rate) results 48 and 76
high CRP (c reactive protein)
high C4 level
mild anemia

My question is why wait to diagnosis and instead actually start to treat the inflammation so I don't constantly feel like I have what feels like a never ending case of the flu. Why wait disease progression and positive anti dna? Maybe treating me sooner rather than later can slow it down or prevent long term complications.

Thanks for any input!
Velvet

velvetmoon
New Member


Date Joined Mar 2008
Total Posts : 3
   Posted 10/15/2008 3:16 AM (GMT -7)   
I also had a false positive RPR test.

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/15/2008 7:15 AM (GMT -7)   
Hi Velvet,

Welcome to the forum. Ummmm . . . a lupus dx does not require a post DS DNA. Click on the link at the end of my signature "4 of 11 Criteria" and you'll see the guidelines for dx. Having said that, we don't necessarily want a Lupus dx in our records unless you are trying to file for disability.

BUT are you saying that he has not prescribed any plan for treating your symptoms? Nothing? It sounds like you've had several visits with him. Often, the rheumy will wait until the 2nd or 3rd visit to get all the blood work done w/o interference from meds. But after they've done their initial evaluation, he really should be treating your symptoms. Make sure he understand what your needs are.

One way to accomplish that is to bring a typewritten page or two with you at each visit. Including, all your current meds, current symptoms (all of them), questions for the doctor, and "What I want the doctor to do for me today". So, if pain in your knees and fatigue are your two biggest issues, than I wouldn't leave his office until you've addressed those specific issues with him. The typed list can be handed to him. There is an outline for doing this list in "Lupus Resources", link at the end of my signature.

I hope this helps . . . and welcome to the forum.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 10/15/2008 9:34 AM (GMT -7)   
Hi Velvet and welcome. It sounds like you are finding out the frustrations of trying to get an accurate diagnosis. Lupus is very hard to diagnose because there is no one definitive test for it. But Rosie is right about not needing a positive anti DS DNA. It looks like from your symptoms and your labs that you meet some of the diagnostic criteria for lupus. Like Rosie said, it takes any 4 of the 11 criteria to get a diagnosis. Maybe in addition to getting your notes ready for the doc, you could take along the list of the diagnositc guidelines and go over them with your rheumy.

The most important thing is that you receive treatment for your symptoms regardless of a diagnosis, especially with all the symptoms you are having and the positive labs.

I know how frustrating and confusing the whole thing can be. Please ask any questions you have. It's nice to have a place where you can come where people can relate to what you are going through. I'm glad you joined us and I hope you'll keep us updated on what you find out.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



kitkat3
Regular Member


Date Joined Jul 2006
Total Posts : 29
   Posted 10/15/2008 10:02 AM (GMT -7)   
I have very similar blood work as you do. I just got diagnosed with Mixed Connective Tissue Disease (more of a Undifferentiated one) last month. I also have Firbomyalgia. It took me years and years to get this diagnoses but the fact that you are seeing a Rheumatologist is great. I don't know why the Dr. is holding off because of the anti DNA DS?? Mine was negative also. Blood work is tricky. I am on Plaquenil and feel better with less fatigue. ANA can differ too and that doesn't mean someone doesn't have the disease. Basing your diagnose on blood work is not good. Nothing is more frustrating than going to the doctor not feeling well in pain just for them to say one test is not positive. These doctors need also to look at the patients symptoms along with the blood work.
Here is a perfect example as to why.......Long story short.........I went to my dr's for years complaining of pain, nausea, vomiting etc...and was dismissed as a nut. Found out that I had a parathyroid tumor growing for 10 years!!!!!!! I had to diagnose myself (how sad is that?) It caused severe osteoporosis. I had it removed last year. My calcium level was high but not too high so they thought it was no big deal. The point is that I had all the symptoms with slightly elevated blood work. Not everything can be based on blood work and by looking at yours it sure seems clear to me something is going on. Please stay on top of this and if you doctor won't treat you or at least try to treat you I would be getting a new doctor.
 
 
Good Luck
 
kitkat3

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 10/15/2008 4:04 PM (GMT -7)   
If by C4 level you mean complement level, if you're having a lupus flare, your complement levels - c3 & c4 would be low - below normal.
SLE, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis, gluten intolerance.

prednisone, cellcept, plaquenil, celebrex, neurontin, synthroid, triamterene, ultram, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/15/2008 4:13 PM (GMT -7)   
Hi Velvet:

I have to agree with Pat if your complements C3, C4, CH50, and you have lupus they should be low. Especially the CH50 only lupus patients have a low level in the complement.

I wish you well in figuring out what's wrong and looking forward to knowing you more.

Best Wishes,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 10/15/2008 4:34 PM (GMT -7)   
I sometimes have an elevated C3 & C4 and like the others said, they are usually low when lupus is active, but I did look up info on elevated levels and they can mean a flare too.  Here's a quote from a medical article that explains elevated C3 & C4:  "Increased levels of both C3 and C4, in addition to increased concentrations of C-ReactiveProtein, are linked to acute inflammatory disease and tissue inflammation"
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 10/17/2008 3:29 PM (GMT -7)   
My rheumy said that before and during the early part of a flare the complement levels can be elivated then once it is over or well on its way it drops because it all gets used up. not recalling exact words just the jyst of the conversation.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements

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