Positive ANCA

[Flint]

Hello.,

I've been posting on a vasculitis forum. I have positive ANCA., and positve ANA.
I received this positive., right before I was leaving my state (NY) - where my medical insurance is.. to come to Florida (where I do not have insurance)- I was not diagnosed with anything.. and I was given steroids. I was only give the ANCA test.. after I personally realized (not the doctors).. that.. something was wrong with my veins. At first I thought it was arthritis.. but then I figured out it was different. As if someone was sitting on my arm. Anyway., I'm curious what Wegeners is. I have not been diagnosed with this.. and I can not go to the doctor right now.. until I return to NY. All I know.. is.. this feels serious. I'm afraid. I think it may be Wegeners.. and don't even know what that means.. or what danger I am in (especially if I am not going to the doctor right now- but.. I am taking steroids that are being mailed to me.. but I am still in pain.. with headaches.. and other bizarre things.......

[LisaMac]

Describe your bizarre symptoms. Wegeners symptoms usually seem unrelated but, because it causes inflammation to the small and medium sized vessels, it affects many random things. It's good you're on Prednisone, what dose? Most of us have sinus, ear, airway, lung, eye and kidney problems...eventually. Unfortunately we seldom have the same early symptoms. Often we get sinus infections that don't clear up with antibiotics, but again, we are all different. Throw out some of your specific symptoms and let's see what happens.

[mishb]

Hi Flint and welcome.

I also have positive ANCA and positive ANA

I have WG and MCTD. If your symptoms are bizarre, you may also have Mixed Connective Tissue Disease.
This is where you have many symptoms such as Lupus, Rheumatoid Arthritis, Raynauds, but they can't pinpoint it to one specific condition.

I would be interested to hear what symptoms you are having, and as Lisa said, lets see what happens.

[Flint]

Hi Everybody., Thanks. You know.. when this first started.. I panicked. My foot swelled up., and I suddenly had "asthma"- I was told I twisted my ankle., (which I didn't)- The reason I panicked.. was not any of these. It was because it felt like someone was sitting on my arm. Actually.. I felt like I was dying, actually., literally. After my foot swelled up <for about a month it was swollen> The "pressure" moved up my leg.. and actually was all over my body. Tingling. I felt like I was "fading away"- I really couldn't move. I actually felt pain in my chest., and trouble breathing. I was "laying around"- Never mind the pain.., moving all around my body. I felt like I was getting randomly "punched"- I could hardly walk up the stairs.. or carry anything. I'm normally very strong., and usually a waitress. I figured out it was my veins. At first I thought it was "arthritis". I looked up somethings., and actually asked a doctor to take some tests <for vascular stuff>- turns out I was positive ANCA. Honestly.. I didn't understand the extent of it <of what that means.. I still don't> I also was ANA positve. The Rheum Doc was not concerned whatsoever about the pos ANCA., and said I had fibromyalgia., and maybe was depressed.. <I wasn't> I definitely was scared.. and still am.. because...... what I really felt was..... like I was dying. I've only admitted that to a few people (one or two)- and the truth it.. I think that's what it is. I still think that's what it is. I was especially scared cause I knew the doctor was useless & it took me 3mths to get to her. What happened was.. I spend from June to Dec.. eventually I went to another Rheum Doc who said "Did anyone tell you... you have a positive ANCA?"- By then.. I was planning to come for Florida. I am not covered in Florida (I'm here now)- He said "I need to see you more to figure out what's going on. He said "If you want go to Florida.. take these steroids, keep in touch., I'll see you when you get back"- So.. now I'm in Florida uncovered. My eyes feel pressure (sometimes water, goop, pain)- My ears hurt sometimes. Mostly I have a headache (since June)- I do cough phlegm. I have bruises which appear randomly (and usually hurt)- afterward.. there is often a dent left behind (like something was degenerated)- I have dents appearing in my wrists., and on the top of my hand. Pain in my wrists.. and hands.. I usually have pain going on somewhere. (like charlie horses.. and someone's kicking me)- I'm mostly exhausted. I used to walk 3 miles a day. Ride a bike. Now I go to the store.. clean a few things.. etc.. and I take a nap.. or just lay & stare for a while. I'm not working. I have a little money saved., but I have no idea what to do about the future. I forget stuff.,. and I'm very foggy. I also have red spots.. or flushing., and veins showing., and some edema. If I lean on something it leaves a deepish dent for like 10 minutes. Honestly., altho I freaked out in the beginning. I'm still scared & sad., but.. I feel.. like.. I powerless kinda now. I'm almost too tired to do anything about it anymore. I keep it to myself. My family really has no idea what I've read about it. I don't want them to worry. I don't want to worry. I would like to be in denial.. but it's hard.. because it's in my face. I'm 45.. and was always a strong person.

[Dirty Don]

Hi Flint and welcome. Yes, it sounds/looks like some form of an AI for sure, maybe WG. The steroids are nasty but necessary to knock down the symptoms at first...should be pretty strong and they have their own symptoms such as rashes and swelling. FM and depression are frequent dxs early on with WG. Roaming pain is definite and common. Aaaannnnd, you need to get home to your insurance docs...preferably WG/AI docs who know what they're doing. Also, you need to include your family in this, not deny them even tho they won't understand at first...give them a chance to understand and possibly help out. This is/can be a long process and that's what this forum is here for...to help/explain/commiserate/vent...and so on. Keep letting us all know what's up and ask many many questions. Best to you.

[mrtmeo]

Hi Flint,
Your symptoms do sound like vasculitis and you should not let this go.
A urinalysis and cmp can show if you have kidney involvement and if so, they can do a biopsy to confirm.
Vasculitis is a life threatening disease when organs become involved and organs can fail in just a few months.
Please don't ignore your symptoms and see if there is a way to get a diagnosis asap.
Your swelling sounds like pitting edema and is common in weg's and MPA (Microscopic Polyangiitis).
P-anca positive typically relates to MPA
C-anca positive typically relates to weg's aka GPA(Granulomatosis with Polyangiitis)

For more info, contact the Vasculitis Foundation. Maybe they would know if you could get your insurance coverage transfered to FL.
Contact Us (http://www.vasculitisfoundation.org/about/contact/)

[drz]

Many insurances will also let you get emergency treatment away from home, especially if they pre-approve it. Have you called the number on your insurance card to inquire as to what they advise.

[Flint]

Thank you everyone. I've been getting bruises lately (they come & go)- I was chatting with someone., and trying to hide the bruise. It's very humbling to experience this.. after having good health a lot of my life. I have someone visiting Mar 3 till the 10th. After that.. maybe I can go the ER.. because I am covered just for that. I have some test results.. maybe i can bring with me. I am scared with how long this is taking for me to be diagnosed. And now I know it will be months more. All summer.. from June to Dec.. I was going to Doctors.. who were kind of ignoring me & telling me I was fine. I did take all sorts of ultra sounds (for a blood clot) x-rays., breathing - lung scan.. whatever.. - But.. now.. months later.. I think something would show.. because I can visibly see some changes. I think I need to be reminded., and encouraged that this is serious. That's why I feel powerless.. and resigned.. - I've even gone through grieving.. (crying)- cause I could feel it taking my life.. - Now I'm just tired., exhausted., and I try to be happy.. and deal with the pain., and diminished stuff... <and just take these steroids till I see the Doc in April., but it's not totally working> - PS.. What is " AI " ?

[annekat]

Welcome, Flint. AI stands for autoimmune disease, which Wegener's is one of, along with other forums of vasculitis, and lupus, RA, MS, and many others that are less well known. They all involve the immune system wrongly targeting healthy tissue, veins and arteries, and organs in the body. Your problems sound very complex and do sound typical of WG and other vasculitis, and you do have positive ANCA, which isn't always but is often an indicator. I'm not an expert but mainly want to say the forum is a great place to get some answers and support, and here you will feel a lot less alone with whatever is wrong. So, it is a good thing that you found us. You need a doctor who is qualified to diagnose and treat vasculitis or to rule it out. I don't know how you will work out your insurance problems but I urge you to try. Going without treatment when you have vasculitis is dangerous. Check here, VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/), for lists of recognized specialist doctors who will consult for free with other docs, and also check this site, Vasculitis Patient Advocacy Network (http://www.vasculitispan.org/), for lists of doctors recommended by patients in various locations. Continue to tell us about what you are going through and how you are managing to deal with it, as we do care.

[Flint]

Thank you so much. Being connected to people makes a huge difference. I also joined the private Vasculitis forum on facebook? I also went to a Lupus support., because I have positive ANA. <as well as ANCA>- I guess what bothers me.. is how nonchalant the doctors were when I was able to go <in the state I am covered.. > I think I had already mentioned I'm in Florida now for a little over a month more- where I am not covered.> The doctor said it was no problem to go to Florida., altho.. all along I have felt serious things happening.. <I didn't need the test to confirm something strange was already happening> - But.. When it DID confirm., and the doctors were still not taking it seriously.. honestly.. I was confused. - not because I thought the doctors were right to be casual.. but because I didn't know what to do - I needed them to help me.. no one ever said vasculitis., Lupus.. I've just been looking it up myself., (and I even thought that before pos test.. by the way I felt) .. that they weren't rushing around.. like I felt they should.. (like taking it seriously)- So.. now I'm not taking it as seriously.. I mean.. I am.. I just didn't know what else to do. So.. now I'm just trying to connect with people.,- I'm taking the steroids (on & off)- and it really helps to not feel so isolated about it. But in the meantime.. things are .. well .. maybe I already mentioned.. I have 4 bruises on me right now.. from who knows what. Thank you everyone!! =)

[LisaMac]

How much longer will you be in Fl?

[annekat]

Good morning, Flint! I know what you mean about the nonchalance of doctors. I ran into it before dx and I still do. My doc didn't think I had WG because I had a barely positive ANCA, while other docs thought I did, and a nasal biopsy finally proved that I did. The only one in my group of docs who was willing to treat WG was the resistant one, and I still feel he is nonchalant and dismissive of things I bring up, and like you, I have to learn most of what I know either here on the forum or on the internet. And we have to be careful about the internet. But where else do we go? I could go to a more qualified doc and I'm sure everyone on here thinks I should. But I'd have to travel some distance, am single and low income, and have double vision when I drive, all kinds of excuses, but the truth is I am fortunately doing very well with the treatment I've gotten, despite the questionable doc. Not everyone is that lucky. Still, I'm getting names of other docs together in case things turn for the worse, and should get established with one of them in advance of that. You will read many stories on here of where people get treatment and how it goes for them. Reading the stories of others is a great way to get familiar with the ins and outs of having vasculitis, if that's what you have, and it will help make sense of what you read elsewhere. I am probably also a member of the vasculitis group you belong to on Facebook, as I belong to several of them, and they are good, too.

I realize you are on steroids, and that is good, whether you have vasculitis or some other inflammatory condition. If you have vasculitis or one of the other AI diseases, you need to additionally be on meds that specifically suppress the immune system, where pred mainly targets inflammation. You've probably read about these meds in your research..... cyclophosphamide (CTX), methotrexate MTX), rituximab (RTX), and some others. If you are only in Florida for a month and only on steroids, you may be OK, as many of us went a couple years or more with symptoms before dx and treatment. But given the way you feel, it seems like taking a chance, and I guess if something really serious happens you will end up in the ER unless you can find someone to treat you there. And when you get back to NY, you need a doc in your corner who will take you seriously and really find out what is going on. There should be some of those in that state and in FL, too! All I can say, I guess, is good luck, and keep us posted!

[Dirty Don]

Flint, my intention here is to scare you into action: I literally 'died' when I assumed I was sick but could power thru it like I have everything else in my life...NOT...lungs were shattered glass, mucous filled sinuses, bruises all over, rashes to boot, wasn't breathing well (duh), taking Ibuprofen like it was candy...body just said enough is enough, went to ER, was put into coma cuz body couldn't sustain for 10 days, then a very long dx/rehab/recovery period. I am good today (in a relative sense!), was a lucky one in the long run...but my putting off what was fairly obvious probably cost me a few moments of a longer life and, for that matter, life at all. Sheesh...DO NOT put this off...please...

[mrtmeo]

Flint,
If you do end up on the ER make sure the dr provides you with a vasculitis expert.
Tell them that you are ANCA positive.

[dawncelest]

Hi flint :) glad you're finding comfort in connecting with others. . My advice to you would be to maybe try and not "look up" symptoms and diseases so much because it can add to a heightened state of anxiety especially if you already feel like you're Dr's are not able to diagnosis you at the moment. . It's great to educate yourself but self diagnosis can be really destructive to your mental and emotional well being. Unfortunately a positive ANA doesn't give an automatic lupus or any solid autoimmune diseases diagnosis. it can fluctuate from positive to negative during periods of flare and while on treatment . I have relapsing polycondritus with overlapping lupus and Wegener’s.. they're all autoimmune diseases with some overlapping symptoms but it is my positive and abnormal labs, scans and biopsies that gave me firm diagnosis. The world of AI diseases is vast and so many of them have very similar or overlapping symptoms,can be systemic and effect all your connective tissues and have a tendency to run in packs so if you have 1 you can have a few like me or more. its really easy to drive yourself crazy researching without direction .. hope you feel better soon :)