Could it be?
Where should I start. 2007 I was in motorcycle accident vs. transfer truck. I sustained 8 fractures and two PE. Since that time I have had chronic muscle/joint pain, fatigue, headaches, muscle weakness, hair loss, dry eyes, rash, malar rash, joint swelling oral/nasal ... [More] ulcers, bleeding gums, finger tips get really red and painful (throbbing) Positive ANA; speckled/homogenous 1:640, postive double DNA, borderline antiphospholipid, ESR is climbing bordering at 20, anemia, high protein blood levels and tissue sample lymphoplasmacytic vasculitis and yet no diagnosis. Three years and no diagnosis. I am tired. I just want to know what's wrong.
I'm not sure what else they would need. anti DNA is very specific to lupus. And an ANA of 640 is a significant level.
Of the 11 criteria for lupus you have:
1. malar rash
2. (mouth?) ulcers
3. positive ANA
4. positive anti DNA
Are you photosensitive? I would think you would be if you have a malar rash.
All that is needed is 4 out of the 11 and you have at least 6. I would encourage you to seek out another dr. My source on labwork says that a high protein levels are seen in lupus, liver disease, chronic infections, alcoholism, leukemia and tuberculosis. Careful review of albumin, globulin and A/G ratio are recommended.
I am photosensitive. I also have fybro and pressure urticaria. My pressure urticaria is so bad it makes me wonder if it is the autoimmune pressure urticaria. I can't wear shoes some days. Any thing that touches my skin can make me swell.
My Rheumatologist tells me that I don't meet the clinical criteria for lupus, instead he is more comfortable with Undetermined Connective Tissue Disease, even though I meet and have met 6 criteria the entire time. I am a nurse and get so flustered at this whole thing. I am so glad to find you all.
I was just reading your response to my questions of your other post - I'm glad you found us here - everyone here has been very helpful to me and I hope you find the same.
I would agree with karajo that it most definitely sounds like lupus - you have more than enough of the symptoms, as well as the backup of the positive bloodwork. I'm not sure why your current Rheumy doesn't agree. Have you considered, or are you able to, see a different rheumatologist? It does not seem like the one you are currently seeing has your best interest at heart, so I would defintely suggest, if you're able, to go see another one and get their input.
Are you currently on any meds for this? If you are, and are able to get in to see another rheumy doc, I would also suggest that you not only see about stopping the meds for a while before your appointment, but also spend some time in the sun right before your appointment. I suggest these things because the more your symptoms are "flaring" when you see the new doc, the more they'll be able to see everythin gyour'e experiencing and hopefully be able to diagnose you correctly.
I wish you the best of luck and Welcome! Please keep us posted on how you're doing.
I do have the option of switching Rheumatologists, in fact I have changed four times already. That is why I am so flustered.
As for taking myself off my meds, my husband is totally against it. I am desperate to find out what is truly going on, but don't want to upset my life, husband, or family. I am at a loss.
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