Random question LV biopsy done 2000 Having problems since never seen by...

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  • Marilyn you made total sense! Ha. Thank you for your input. It does help me. The phone call I got made me go...Ok so now what? It was as though they felt "done". But I felt done with THEM when I left the office. I love how they call with results and you have no idea what it even means. Thank you Katie as well. I have seen posts about bloodwork and then posts saying bloodwork does not tell diagnosis. I guess it has a lot to do with what type of Vasculitis you are dealing with. I do have an appointment with an excellent Rheumatologist on the 21st. Actually a wonderful person from this page gave me his name! Such a nice network here. I spent 20 years alone in this! Thank you both and I am sorry for the troubles Vasculitis brings.

  • We certainly weed through our doctors, don't we. An absolute necessity. I just wish we had a bigger network of vasculitis experts located across the country, within at least driving distance.

  • My bloodwork all came back negative also. My doc says that probably a third of people dont have elevaated blood work but still have disease.

  • Thank you. I just don't want to go into the Dr making a mountain out of a molehill (literally!). I have signs of it and the Dr who ordered the blood tests barely looked at my legs and hands and photo's. I was the one who pulled my pant legs up and took my swollen feet out of my shoes and she barely glanced. Next! :)

  • My daughter has always been ANCA negative. Her Rheum said she prob has antibodies for which no test has yet been invented. At the beginning of her vasculitis she had no abnormalities in her labs, but now her SED Rate, CRP, IGG etc goes up and down and there are plenty of abnormalities. Sometimes she can feel like super crud and her labs seem "okay" so that's not the be all end all criteria. I surely hope you have more success w/your new Rheum appt. Sometimes it takes a few rotten apples before you find the peach!

  • PANCA is only used to help RULE IN not RULE out...meaning that if you have all the symptoms AND you are positive for PANCA, thats just another thing to help confirm your diagnosis..If you are negative for PANCA,it doesn't mean anything and you can still have the disease..I have Behcets and there's something called HLA B51..But I am classic Behcet's and I am HLA b51 negative...If I were postive for hla b51 it's just another thing to confirm FOR SURE it's behcet's ,,It sounds like that doc needs to review how blood tests work...

  • Thank you Deb Audry and Adrienne..when you get limited information you start to doubt the reasons you are trying to get help.Thank you for sharing your experiences and knowledge about this blood test in relation to vasculitis. This group is priceless. Thanks.

  • No problem! Anytime! I know it's hard to know what's going on, but always trust your gut..and I would definitely find another rheumatologist. Have you tried having a rheumatologist consult with a vasculitis center? For example, my physician here in Dallas, specializes in vasculitis,but she's never seen a Behcet's patient before..So she consults with Dr. Yazici in NYC at the Behcet;s syndrome center..I like it because she's young and she knows what she doesn't know and has no problem consulting with a more experienced physician..I feel this way like I'm getting the best care possible..a good solid rheumatologist near me who consults with world experts when she doesn't know something

  • Adrienne that is wonderful that your Dr does that! I wish more specialists would. I have heard others here say their Drs do the same thing. That is key to accurate treatment. I have three rare diseases so unfortunately this is familiar for me to be on the Dr hunt. Actually Sue Yeagle has been so kind to give me her Dr's name. I will drive an hour and a half to see him on the 21st.

  • Sharon, it is very hard to find the right doc! I too continue to search for the right one- and you also have to het past their ridiculous referral protocol. I had my immunologist tell me my family doc (who had referred me to HIM) would treat me. I asked him what he would tell me if I was his daughter or wife...and whaddya know- he'd have me see the head of immunology at the University of Michigan. Be pushy, don't take the first answer you get! Best to you!