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flint01
Regular Member


Date Joined Aug 2014
Total Posts : 25
   Posted 11/18/2014 11:09 PM (GMT -6)   
Does anyone have information regarding this? I have a positive ANCA., (and an ANA 1:160).. I have a follow-up.. This is a new development.,. but anything I'm reading.. is .. making me afraid. Thanks =)

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 11/19/2014 2:11 PM (GMT -6)   
Don't worry.

Do you have any symptoms or just some blood test results?

There is no reason to worry, as even if you have Lupus that doesn't mean you will develop more symptoms. Some people do, some people don't, and there are several med options to keep things in check. Wait and let the rheumatologist figure it out -- that is their job!

Worry = Stress = Increased Symptoms!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

fnfiacco
Regular Member


Date Joined Apr 2014
Total Posts : 66
   Posted 11/19/2014 3:55 PM (GMT -6)   
the anca is for vasculitis. do u have any thing like a rash or spots on ur skin? also do u know what your esoinophils count was and if you have sinus issues? i had an ANCA and mine was neg but also i have the ana 1 160 but got it down to 1 80.

do you know what ur ana pattern was?

fnfiacco
Regular Member


Date Joined Apr 2014
Total Posts : 66
   Posted 11/19/2014 3:59 PM (GMT -6)   
sorry i was asking because theres a vasculitis called churg strauss and it has to do with high esinophils/ allergies and sinusitis. theres other kinds of vasculitis too but the ANCA is a test for vasculitis. but u can also get vasculitis with lupus or any other auto immune disease.

flint01
Regular Member


Date Joined Aug 2014
Total Posts : 25
   Posted 11/19/2014 6:06 PM (GMT -6)   
I had high EOS.. I went initially with vascular complaints. Originally I thought it was joint., but it's not. I even see veins., and am having pain.. sort of chronic now. It started with my foot swelling up.. and then "asthma".. except.. it's not asthma. I have a headache everyday. All of this started at the same time.. the onset.. about June. I have a lot of very strange symptoms. Tired., most of it's almost hard to describe., but I'm just trying to get accustomed to pain. It feels like someones sitting on my arms., it's a myriad of things.. and they all feel vascular. This is my second opinion rheumatoid. He looked at the tests from before & said "Did they tell you you have a high ANCA?".. Which.. the last doctor never told me. Thank you for the reassurance. I just looked it up (yesterday).. because I found out yesterday. It doesn't look encouraging.. especially because of how I'm feeling.. also... Thank you! (PS.. I think it's vasculitis., & I'm scared)

fnfiacco
Regular Member


Date Joined Apr 2014
Total Posts : 66
   Posted 11/19/2014 6:30 PM (GMT -6)   
sounds like churg strauss since u have the high eos. check with ur doctor there is treatment for it. dont worry you will make it worse. i just got tested for it last week and my eos was normal anca was neg. just my ANA sounding like scleroderma ughhh. vasculitis can cause a high ANA. just see a rheumatologist or someone specializes in it ASAP u should be able to recover from it

oh and im not a doctor so i could be wrong. but i would ask ur doctor about it and see what they think. it says some people have mild symptoms while others is more serious.

Post Edited (fnfiacco) : 11/19/2014 4:34:02 PM (GMT-7)


flint01
Regular Member


Date Joined Aug 2014
Total Posts : 25
   Posted 11/19/2014 6:53 PM (GMT -6)   
Oh Wow! I've never heard of Churg Strauss. This Doc just told me about the ANCA (plus I had "asthma".. and ANA 1:160).. I was never diagnosed with anything. Honestly.. I have been getting ignored by other doctors. This one.. seems very good. He said "Something is definitely wrong.. we will get to the bottom of this".. because I've also had little bruises., and I have that "mottling" all over my legs.. He took blood tests.. I'm not sure what for., and I have a follow up.. but it does sound like that Churg Strauss! I'm learning a lot. Thank you!!

PS.. Thanks for everyone's advice on worrying!! I think that's what triggered 1/2 this stuff.. was worrying about other things (not health related)...

fnfiacco
Regular Member


Date Joined Apr 2014
Total Posts : 66
   Posted 11/19/2014 8:35 PM (GMT -6)   
also check for antiphospholipid syndrome and get your blood clotting factor checked. !!! see if they did that. hopefully all will be fine. also if your not already try detoxing it gets rid of inflammation in ur body. it helped for me a whole lot. got my sed rate from 41 to 11 and now 6. stay away from carbs and wheat and supplement with vitamin D Folic acid and Omega 3 . and magnesium. just try to really cut down on sweets and sugars and carbs and take ibprofun until they tell you what they want to do to treat you. the ibprofun keeps the blood thin and reduces inflammation i think with vasculitis there is a increase in risk for blood clot. but taking ibprofun will keep it thinner and decrease inflammation.

good luckkkkkk ^_^

flint01
Regular Member


Date Joined Aug 2014
Total Posts : 25
   Posted 11/19/2014 8:51 PM (GMT -6)   
Thank you! For all the information., especially the alternative ideas. Is there a particular detox? I do have a sweet tooth.. - Thank you for the supplement ideas. It really helps chatting with people who are dealing with it directly. The doctor didn't even tell me what ANCA was.. I've just been trying to educate myself. And this really helps. Thank you so much!

fnfiacco
Regular Member


Date Joined Apr 2014
Total Posts : 66
   Posted 11/19/2014 9:03 PM (GMT -6)   
it really sounds like that kind of vasculitis with the high EOS and the ANCA and ur asthma. but again im not a doctor so i cant be sure. i would bring it up to your doctor though. Also i would ask them to check the antiphospholipid thing as well. But the detox is so important because the treatment for vasculitis is prednisone and immunosuppresants which are not very healthy for the body. it might put this in remission but you dont want to have to stay on those drugs especially high doses the side effects can be serious. your case sounds mild though compared to what it could be so i dont think it will be a problem for you. if you can reduce inflammation with the detox diet you can be on very low doses of those drugs to treat the vasculitis. alot of people are able to put their auto immune diseases in remission with diet alone like one person i talked to with ankylosing spondylitis and another with mixed connective tissue disease. im not sure with vasculitis but its gotta help not make it worse. i would suggest going on mark hymans website. you want to avoid things like bread, pasta, candy, sodas and really increase the vegetables and fruits and lean meat/ especially fish. if you follow it really strictly it will really help get rid of inflammation and you probably wont need any high dose of prednisone or whatever else they want to treat you with. i actually dont have this disease or a positive ANCA just ANA but i had some vascular problems with my auto immune disease and im doing soo much better with my diet. i was able to notice significant improvement and have been able to go off prednisone. i mean it isnt going to work 100 percent for everyone but it helps with any inflammatory condition and it will help you get better faster.

flint01
Regular Member


Date Joined Aug 2014
Total Posts : 25
   Posted 11/19/2014 9:26 PM (GMT -6)   
Wow! Thank you! I've never heard of Mark Hyman! I don't currently take any drugs. I'm disappointed at the idea that I may have to. I usually seek alternative things.. but.. I do have a weak spot for candy. I do eat a lot of good foods.. but I will need to be more disciplined, I think. I guess it would be good to look up what foods cause inflammation. I'm just starting to understand inflammation. What's going on with me., has been debilitating. I've always been a strong person., and have worked as a waitress., but I haven't been able to. I didn't know what that meant for my future. This doctor is the 1st one to acknowledge something's going on (through blood tests.., and what I'm saying., and what he sees). But honestly.. quietly, to myself (I haven't shared it with family members).. It actually feels life threatening (even tho I've had no idea what's going on).. Cause I have felt pains in my chest (and short of breath)., along with a lot of other very strange scary sensations. I didn't go to the hospital., because.. I didn't want to have to stay there. Now the pain has subsided (in my chest)., Just in time for a V/Q test I got today. (to check for a blood clot) - I think it looked like things were Ok at this moment. But right now .. as I type.. I have pain (like someones punching "charlie horses" in various parts of my body).. My next follow up is Dec 3rd., so.. I'm just waiting.. (and trying to be "pro-active") - Thank you!

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 11/19/2014 9:56 PM (GMT -6)   
It is important to keep your Drs informed when you change your eating habits. With Lupus, an anti-inflammatory diet may be the EXACT WRONG THING to do, depending on what plan of treatment your Dr has in mind. It is very important to tell your Dr if you are eating specifically for a disease you think you might have.

Also make sure you don't take over the recommended amounts of any over the counter medications (like the ibuprofen mentioned above), and make sure the Drs are aware of what you are taking and how much. These things can skew the tests and interfere with getting a proper diagnosis.

Remember people posting here are not Drs, and remember that walking into a Dr's office and telling them the diagnosis is a sure-fire way to get a Dr with a closed mind. You hire them to keep an open mind and consider all the possibilities, not just the ones you've read about on the internet. I highly recommend going into the Dr with a list of SYMPTOMS, not a list of diagnoses! You'll get much better results that way, I promise.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

flint01
Regular Member


Date Joined Aug 2014
Total Posts : 25
   Posted 11/19/2014 11:41 PM (GMT -6)   
Thank you Lynn., It's interesting.. but.. I've made a point of NOT taking anything.. supplements.. pain killer (I was once prescribed Napraxon for some pain).. because I didn't want anything to skew the tests. I didn't want results blamed on things I was taking. So.. pretty much at this point., I'm not even taking vitamins. I went at first to one rheumatologist.. and asked about a hypercoagulation tests.. because I started figuring out the pain was not my joints., but somehow.. my veins. Because I had looked that up, myself.. I think the doctor seemed annoyed. The results were positive but she said they were not "that high"- However, now they are higher.. and I switched rheumatologists. I just told this new doctor the symptoms. He said there were several high results within the tests the last doctor took. He was wondering why no one had mentioned it to me., or why no one gave me steroids. I said I didn't know. Honestly.. the first doctors ego may have been annoyed I tried to figure it out on my own. It turns out I was right.. but she wasn't interested in that fact. She was not a very good doctor.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 11/20/2014 6:29 AM (GMT -6)   
I don't think it's as much a matter of a Dr with an ego or a bad Dr, it's more about how humans think.

Say I hand you a forest photo and tell you to look for the animals. What you'll focus on is a great deal different than if I hand you the picture and tell you to think about monkeys. In the first instance you'll probably find several different animals, whereas in the second you'll be so busy thinking "monkey" that you'll probably overlook the snake and the honey bee.

If we suggest a diagnosis it immediately has the effect of subconsciously influencing (narrowing) the physicians thought process.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

flint01
Regular Member


Date Joined Aug 2014
Total Posts : 25
   Posted 11/20/2014 9:49 AM (GMT -6)   
I do see what you're saying.. and I agree. That's a cool idea.

With this first doctor.. I did have a list of symptoms.. but she said very sternly.. "Why are YOU here?".. She was not interested in hearing the symptoms. I look healthy. Her manner immediately "shut down" communication. I realized she didn't want to hear my list. I wouldn't say she was a bad doctor, but it did so happen she had "2 stars" on patient opinion., but I didn't pay attention to that. She was very smart. - but very stern., and impersonal. I was trying to show her my visual symptoms, also, but she wasn't interested in looking. I had a vein popping out.. that appeared the day before. Without looking she said "That's a varicose vein." I knew it was not., a few days later it disappeared. She said my mottling was because I was cold.. meanwhile I was hot. <It was summer., I had shorts on> . She barely made eye contact., and only looked at the computer. I appreciated everything she did, with some blood tests she took., that now the other doctor is examining. I do appreciate the new doctor.. who is open to listening. He also examined physical symptoms. The only thing I "sensed" on my own.. was that something vascular was happening. By the sensations I was having., and by visual changes suddenly happening. Thank you for your input! Everyone! It just helps me feel less alone with the whole thing.. and is giving me.. "community" reassurance.. which I .. very much appreciate....
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